Research

Publication Title:

Prevalence of 12 Common Health Conditions in Sexual and Gender Minority Participants in the All of Us Research Program

Community Title:

Common Health Conditions among LGBTQIA+ People in the All of Us Research Program

What Did Researchers Do?

It is difficult to study the overall health and wellbeing of LGBTQIA+ communities because there is a lack of data that combines someone’s health records with information they provide through a survey. The All of Us Research Program aims to overcome this challenge by collecting multiple types of data and partnering with LGBTQIA+ people. The overall goal of the program is to improve health and the way healthcare is provided for the community. However, dealing with a large amount of data from various sources poses a potential issue in keeping the data high quality and accurate.

To address this, we studied data from 346,686 participants in the All of Us Research Program. We compared the social and demographic characteristics (for example, race and ethnicity, education, employment, and income) and health conditions of LGBTQIA+ people to those who do not identify as LGBTQIA+. We used survey data to identify LGBTQIA+ participants and non-LGBTQIA+ participants. We then analyzed differences in 12 common health conditions across groups based on participants’ gender identity, sex assigned at birth, and sexual orientation. Health conditions were pulled from participants’ electronic health records. Additionally, we checked for missing data.

What Was New, Innovative, or Notable?

This is the first study to examine the health of LGBTQIA+ individuals in the All of Us Research Program, which has one of the largest samples of LGBTQIA+ people in the United States. We also show that using data from All of Us has the potential to improve healthcare for LGBTQIA+ communities. This is because the program combines data from various sources, allowing for a better understanding of LGBTQIA+ communities and their unique health experiences.

What Did Researchers Learn?

Of the 346,868 All of Us participants, 8.9% identified as LGBTQIA+. Anxiety, depression, HIV diagnosis, and tobacco use disorder were more commonly reported among LGBTQIA+ subgroups. Cardiovascular disease, kidney disease, diabetes, and hypertension were less commonly reported. Different LGBTQIA+ subgroups reported substantially different levels of experiencing conditions like asthma, cancer, substance use disorder, and a body mass index (BMI) greater than 25.

We also found issues with missing information in the All of Us data that could inaccurately affect research findings. For instance, nearly 25% of All of Us participants had missing electronic health records. This was most common among gender diverse (such as genderqueer or nonbinary) people who were assigned female at birth. Currently, only participants who joined the program through a healthcare provider organization have their electronic health records available.

What Does This Mean for Our Communities?

The diversity of data available from the All of Us Research Program can help researchers find differences in health conditions among LGBTQIA+ people. This can help guide the process of making policies and resources to better prevent and treat health issues in LGBTQIA+ communities.

What’s Next?

The All of Us Research Program is continuing to engage with LGBTQIA+ people through community partners like PRIDEnet. The program’s goal is to partner with at least 1 million participants. The program also has plans to collect more types of data and to find better ways to transfer data to avoid missing information.

However, there are concerns about data privacy, especially for LGBTQIA+ communities due to the current social and political climate. To address this, the All of Us Research Program has put in place many processes to review and prevent research that could potentially cause harm to the LGBTQIA+ community. The Data Privacy Infographic outlines how participants’ privacy is protected. The PRIDEnet team will continue to work closely with All of Us to ensure that the program continues to treat the LGBTQIA+ community with respect and dignity.

Action Steps:

See allofus.nih.gov for more information and to share this study with your family and friends.

To learn more about the All of Us Research Program’s research data repository or how LGBTQIA+ participants are taking part in All of Us, please visit researchallofus.org and joinallofus.org/lgbtqia, respectively.

Citation:
Tran NK†, Lunn MR†, Schulkey C, Dauer T, Nambiar S, Tesfaye S, Chatterjee A, Kozlowski D, Randal F, Lozano Mesa P, Hundertmark E, Eastburn C, Pho AT, Dastur Z, Lubensky ME, Flentje A, Obedin-Maliver J. Prevalence of 12 Common Health Conditions in Sexual and Gender Minority Participants in the All of Us Research Program. JAMA Netw Open. 2023, July 31: 1-17. doi: 10.1001/jamanetworkopen.2023.24969 †co-first authors

Official Title:

A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study — The PRIDE Study

What Did We Do?

The PRIDE Study is an online study of LGBTQ+ physical, mental, and social health. In 2015, our team built a secure online website to learn about LGBTQ+ health. This website is one of the ways we interact with participants in The PRIDE Study. We also built a national network of organizations to help engage LGBTQ+ people in health research. This network is called PRIDEnet.

We made the website interactive and fun. We recruited 13,932 people over 2 years. We recruited people of diverse ages, sexual orientations, and gender identities. We recruited people from different geographic locations in the United States. All of the people who joined The PRIDE Study interacted with the website. They completed long annual surveys. The surveys included sensitive topics. About 32% (3,813) of the people who joined were gender minority people.

What Was New, Innovative, or Notable?

This is the first time an online website and a national network were built for health research with LGBTQ+ communities. We think that this is a cost-effective and empowering way to do research. We think that this type of research will be even better in the future, as technology improves.

What Did We Learn?

We learned that online-only, long-term studies are possible. People engaged with the website and organizations joined our network. We recruited and retained more participants than we thought we would, particularly gender minority people.

What Does This Mean for Our Communities?

We can use online websites like this one to conduct health research and answer important questions. We can get LGBTQ+ organizations more actively involved in health research. We can answer more diverse questions about subcommunities within the LGBTQ+ community. We can provide better information for health care providers and policymakers so that people in our communities get better health care.

What’s Next?

· We continue to enroll people in The PRIDE Study.
· We engage LGBTQ+ organizations in PRIDEnet.
· We are producing interesting and relevant research.
· We are using the input of many LGBTQ+ people.
· We are disseminating research findings to communities.

Action Step:

See www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Mitchell R Lunn, Micah Lubensky, Carolyn Hunt, Annesa Flentje, Matthew R Capriotti, Chollada Sooksaman, Todd Harnett, Del Currie, Chris Neal, Juno Obedin-Maliver, A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study–—The PRIDE Study, Journal of the American Medical Informatics Association, ocz082, doi.org/10.1093/jamia/ocz082

Official Title:

Using mobile technology to engage sexual and gender minorities in clinical research

What Did We Do?

The PRIDE Study is an online study of LGBTQ+ physical, mental, and social health. Our team recruited 18,099 participants for a pilot phase (also known as a testing phase). The phase lasted from June 2015 to May 2017. This pilot phase used an iPhone app.

Of those who consented to join, 16,394 people provided data. More than 98% identified as sexual minorities (people who are not heterosexual or straight). More than 15% identified as gender minorities (people who are transgender or gender non-binary). Participants completed 24,022 surveys. They provided input on 3,544 health topics. They cast 60,522 votes about those topics.

This article provides details about the app’s features. It also provides information about participants. We wanted to know gender identity, sexual orientation, race, ethnicity, educational level, annual income, and geographic region.

What was New, Innovative, or Notable?

This is the first time a mobile app was used to engage and recruit lots of LGBTQ+ people who aren’t usually included in health research. We think that apps may be useful in other communities that have had negative experiences in health research settings such as hospitals and clinics.

What Did We Learn?

We learned that a lot of LGBTQ+ people joined an online health study. They wanted to talk about health topics. They liked accessing live data via dashboards.

We had problems. For example, incomplete app testing resulted in a data storage error. Also, lots of people voting at once resulted in slow loading at times. Software problems kept us from easily providing new surveys to participants.

What Does This Mean for Our Communities?

We now have an easier and more accessible way to get health information from LGBTQ+ communities. That means we can ask more specific and nuanced questions, especially as peoples’ lives change. We can give this information back to organizations that serve the health of our communities so that they can do their jobs even better.

What’s Next?

We decided that there might be even better ways to enroll people in this type of study. The app model had problems. iPhones cost a lot. Some people can’t afford them. It was hard to develop an app for Android phones at the same time.

As a result of this pilot, we developed a web-based research portal. This portal is accessible from any Internet-connected device regardless of the size of the screen. This allows for more diverse ways to access the study, not just from a mobile phone.

Action Step:

See www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Lunn MR, Capriotti MR, Flentje A, Bibbins-Domingo K, Pletcher MJ, Triano AJ, et al. (2019) Using mobile technology to engage sexual and gender minorities in clinical research. PLoS ONE 14(5): e0216282. https://doi.org/10.1371/journal.pone.0216282

Official Title:

Community norms for the Eating Disorder Examination Questionnaire among cisgender gay men

What Did We Do?

Many researchers who study health use a survey to ask about eating disorder attitudes and behaviors. We asked gay cisgender (people whose gender identity matches the sex they were assigned at birth) participants in The PRIDE Study to fill out this widely used survey. We analyzed the average scores of their answers.

What was New, Innovative, or Notable?

This is the first study to show the average scores of this survey for any gay men.

What Did We Learn?

People in the study engaged in dietary restraint (20%), binge eating (11%), excessive exercise (10%), laxative misuse (1%), and self‐induced vomiting (1%) at least once in the past 28 days.

What Does This Mean for Our Communities?

These results will help healthcare providers and researchers to use this survey with cisgender gay men.

What’s Next?

We want to understand more about eating disorders in other sexual and gender minority communities.

Action Step:

See www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata JM, Capriotti MR, Murray SB, Compte EJ, Griffiths S, Bibbins-Domingo K, Obedin-Maliver J, Flentje A, Lubensky ME, Lunn MR. Community norms for the Eating Disorder Examination Questionnaire among cisgender gay men. Eur Eat Disord Rev. 2019 Dec 2. https://doi.org/10.1002/erv.2708

Official Title:

Supporting sexual and gender minority health: Research priorities from mental health professionals

What Did We Do?

An internet survey was emailed to mental health providers asking about 62 different topics. We wanted to know which ones are important in their care of LGBTQ+ people. We also asked if there were any other topics that we should include in the survey.

One hundred and sixty-three mental health providers responded:

˙30% were psychiatrists
˙18.5% were marriage and family therapists
˙18% were psychologists
˙13% were social workers
˙13% were mental health counselors
˙7% belonged to several different professions in mental health

Just over half of these providers gave us new topics that were important to their care of LGBTQ+ people.

What Was New, Innovative, or Notable?

Directly surveying providers is not common. Asking providers who care for LGBTQ+ people to help guide a study is new. So, it may take less time to bring study results to the providers who need information to improve care if they were involved in choosing the topics.

What Did We Learn?

Mental health providers said that of the 62 topics, the most important to their care of LGBTQ+ people were:

˙stress related to being LGBTQ+
˙lifestyle factors that support emotional strength and health
˙depression
˙intimate relationships
˙suicide

We learned that there are areas that we did not ask the mental health providers about, but that they would like to more research on.

˙24% wanted more research on relationships among LGBTQ+ people:
˙Sexual relationships with many partners
˙Family relationships such as LGBTQ+ children and their families
˙Community relationships such as how LGBTQ+ people fit into their communities
˙22% wanted more research on how LGBTQ+ and other identities (such as race, ethnicity, immigration status, or disability) affect their health and experiences.

What Does This Mean for Our Communities?

There are opportunities to improve the information that mental health providers have, so that they can better care for LGBTQ+ people. While some topics have been covered in research, they remain important to providers and should continue to be researched.

There are new topics (listed above) we can share with mental health providers that may improve care.

What’s Next?

Study results will be used to help inform the topics covered in The PRIDE Study. Some of the topics, such as depression and suicide, have been researched many times. This study shows there may be more ways to help care for LGBTQ+ people.

Action Step:

See www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Clark, Kristen D., Matthew R. Capriotti, Juno Obedin-Maliver, Mitchell R. Lunn, Micah E. Lubensky, and Annesa Flentje. “Supporting Sexual and Gender Minority Health: Research Priorities from Mental Health Professionals.” Journal of Gay & Lesbian Mental Health, December 17, 2019, 1-17. https://doi.org/10.1080/19359705.2019.1700865

Official Title:

Characterization of substance use among underrepresented sexual and gender minority participants in The Population Research in Identity and Disparities for Equality (PRIDE) Study

What Did We Do?

Substance use can have a dramatic impact on peoples’ personal and professional lives. Over time, substance use can put people at risk of certain types of cancer and cause heart and liver problems. LGBTQ+ community members may be at higher risk of using substances due to increased discrimination and stressful experiences like coming out to unsupportive family and friends. This study looked at substance use among 1,790 LGBTQ+ adults. About 40% (691) of these folks may not have been able to take part in previous research due to having non-LGB sexual orientations such as asexual, pansexual, or queer, and/or identify as genderqueer, transmasculine, or transfeminine. We looked for difference among these groups in the use of alcohol, marijuana, and other illegal or non-prescribed drugs.

What Was New, Innovative, or Notable?

This is the first study to look at substance use among diverse LGBTQ+ community members, such as people who identify as pansexual, asexual, queer, transmasculine, transfeminine, and genderqueer, and not just lesbian, gay or bisexual.

What Did We Learn?

Over half (51%) of the LGBTQ+ people in this study reported binge drinking within the last year, almost 40% reported marijuana used within the past year, and nearly 20% reported illegal or non-prescribed use of other drugs. Additionally, 30% reported feeling that alcohol, marijuana or other drug use had been an issue in their life. This study found that alcohol, marijuana, and other drug use was different among different groups of LGBTQ+ people who have not been part of research on substance use in the past, including transmasculine, transfeminine, and genderqueer people who identify as asexual and queer.

What Does This Mean For Our Communities?

This work shows that more research is needed to better understand the effects of substance use in our diverse LGBTQ+ communities. Not all members of this community use the same substances in the same way. So, we need to create better screening guidelines and treatment programs by including diverse people from all sexual orientations and genders to better understand substance use in LGBTQ+ communities.

What’s Next?

Alcohol use screening helps healthcare providers to identify and treat patients for possible alcohol use problems. However, current screening guidelines are based on gender and don’t include transgender and gender expansive people. We have already started to look at screening guidelines for possible harmful alcohol use among these groups.

Action Step:

Share this study with your friends and family.

Citation:

Branden T. Barger, Juno Obedin-Maliver, Matthew R. Capriotti, Mitchell R. Lunn & Annesa Flentje (2020): Characterization of substance use among underrepresented sexual and gender minority participants in The Population Research in Identity and Disparities for Equality (PRIDE) Study, Substance Abuse, DOI: 10.1080/08897077.2019.1702610

Official Title:

Screening gender minority people for harmful alcohol use

What Did We Do?

We wanted to find out how health care providers can best identify harmful alcohol use for transgender and gender expansive people (people who have genders that are not just binary – meaning not just woman or man, for example, and people who are genderqueer or gender non-binary). We wanted to help health care providers know which questions to ask to know if they need to ask more questions about alcohol use. We used data from The PRIDE Study 2018 Annual Questionnaire. We tested several ways that health care providers could ask about how people drink alcohol and which were best at identifying 1) harmful alcohol use and 2) bad things that can happen as a result of alcohol use. We looked at transgender women, transgender men, and gender expansive people separately from other groups because health care providers don’t have any information on how to treat such patients.

What Was New, Innovative, or Notable?

This is the first study to find out how to ask transgender and gender expansive people for harmful alcohol use.

What Did We Learn?

We learned that gender minority people can be asked about harmful alcohol use with a single question. Asking if they have had “5 or more” drinks containing alcohol on one occasion in the past year was as good as other methods. In addition, asking the question in this way worked well for transgender men, transgender women, and gender expansive people. Answering yes to this question doesn’t mean the person has an alcohol problem. Instead, it is a way for health care providers to know if they should ask their patients more questions about alcohol use or offer services for alcohol use.

What Does This Mean for Our Communities?

Health care providers can now confidently ask their transgender and gender expansive patients about alcohol use. Before this study, health care providers had to use guidelines that were designed for cisgender men and women.

What’s Next?

We need to get the word out about how to provide alcohol screening for transgender and gender expansive patients. It would also be good to study these questions in a healthcare setting.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Flentje, A., Barger, B.T., Capriotti, M.R., Lubensky, M. E., Tierney, M., Obedin-Maliver, J., & Lunn, M. R. (2020). Screening gender minority people for harmful alcohol use. PLOS One, DOI.org/10.1371/journal.pone.0231022

Official Title:

Community Norms for the Eating Disorder Examination Questionnaire (EDE-Q) among Transgender Men and Women

What Did We Do?

We asked transgender men and women participants in The PRIDE Study to fill out a widely used survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers.

What Was New, Innovative, or Notable?

This is the first study to show the average scores of this specific survey for transgender men or women.

What Did We Learn?

Study participants engaged in following behaviors at least once in past 28 days:

Dieting

Transgender Men 25%

Transgender Women 28%

Eating large amounts of food in a short period of time

Transgender Men 11%

Transgender Women 13%

Exercising a lot

Transgender Men 8%

Transgender Women 8%

Forcing themselves to vomit

Transgender Men 2%

Transgender Women 2%

Using laxatives (medicines for constipation to encourage bowel movements) for weight loss

Transgender Men 0.3%

Transgender Women 0.6%

Transgender men reported higher rates of eating large amounts of food in a short period of time and exercising a lot compared to the general population. Transgender women reported higher rates of dieting and exercising a lot compared to the general population.

What Does This Mean for Our Communities?

These results will help healthcare providers and researchers to understand how their transgender patients’ or participants’ scores compare to the average transgender man or woman’s score for this survey.

What’s Next?

We want to understand more about body image and eating disorders in other sexual and gender minority communities.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata JM, Murray SB, Compte EJ, Pak EH, Schauer R, Flentje A, Capriotti MR, Lubensky ME, Lunn MR, Obedin-Maliver J. Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among transgender men and women. Eating Behaviors. https://doi.org/10.1016/j.eatbeh.2020.101381

Official Title:

Development of an affirming and customizable electronic survey of sexual and reproductive health experiences for transgender and gender non-binary people

What Did We Do?

Participants in most research studies about contraception, pregnancy, and abortion are cisgender and heterosexual. “Cisgender” means that the participant’s gender is the same as their birth sex. We wanted to know more about the reproductive experiences of transgender, non-binary, and gender-expansive people who were assigned female or intersex at birth. We also wanted to know more about the reproductive experiences of cisgender sexual minority women. We created an online survey to ask about people’s experiences with contraceptive use, pregnancy, and abortion.

We asked about many things in this survey. Examples of types of questions include gender identity, language used for sexual and reproductive body parts, and medical or surgical steps people have taken to affirm their gender. We also asked about sexual attraction and sexual activity, contraceptive use and preferences, and pregnancy history and desires. This study shows how questions in the survey were changed with participants’ input to create a more inclusive and positive survey experience.

What Was New, Innovative, or Notable?

We measured people’s sexual and reproductive health experiences without assuming their gender identity, sexual orientation, or the gender identity or sexual orientation of their partners. Also, we allowed participants to choose words in the survey for different sexual and reproductive body parts and experiences. We hoped that they would feel comfortable participating if their gender identity was different from their birth sex.

What Did We Learn?

We learned new things about how participant input can be used in different ways to improve research. Specifically, we learned that participant input can make the survey a more positive experience for participants, and can potentially improve the quality and accuracy of the data collected. For example, we used participant input in the initial design and in the implementation of the survey. We learned that it takes a lot of time to create a survey experience that is truly participant-centered, but we think this time is well spent if it results in a more positive research experience.

What Does This Mean for Our Communities?

Creating more inclusive and positive surveys for broader groups of sexual and gender minority people will improve their survey experience. Creating surveys with language that people normally use to describe their bodies and bodily activities helps people feel good. We hope researchers can use this survey to understand the sexual and reproductive health experiences of ALL people, regardless of gender identity. Such results can better reflect the gender and sexual diversity that exists in our communities.

What’s Next?

We hope future researchers will offer participants the opportunity to substitute words in order to develop surveys that affirm participants’ beliefs. We hope that future research can find out if using language selected by participants in a survey leads to higher response rates compared to surveys that do not include language selected by participants. We hope that this method will inspire others and will advance the field of survey research for people who have been treated as insignificant in society.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Moseson H, Lunn MR, Katz A, Fix L, Durden M, Stoeffler A, Hastings J, Cudlitz L, Goldberg E, Lesser-Lee B, Letcher La, Reyes A, Flentje A, et al. (2020) Development of an affirming and customizable electronic survey of sexual and reproductive health experiences for transgender and gender nonbinary people. PLoS ONE. DOI:10.1371/journal.pone.0232154

Official Title:

Depression and anxiety changes among sexual and gender minority people coinciding with onset of COVID-19 pandemic

What Did We Do?

We wanted to understand how the COVID-19 pandemic might be impacting the mental health of LGBTQ+ community members. We compared responses to questions on anxiety and depression from The PRIDE Study 2019 Annual Questionnaire with responses to the same questions collected just after the pandemic began.

What Was New, Innovative, or Notable?

This is one of the first studies to look at mental health and changes in mental health related to the COVID-19 pandemic among LGBTQ+ people.

What Did We Learn?

We learned that people overall had more symptoms of anxiety and depression after the pandemic began (with some interesting exceptions):

• People who weren’t very anxious and depressed before COVID-19 were overall more anxious and depressed after COVID-19 began.

• People who were very anxious before COVID-19 overall felt about the same after COVID-19 began.

• People who were depressed before COVID-19 were overall slightly less depressed after COVID-19 began, though probably not in a noticeable way, as they already were experiencing a lot of depression.

What Does This Mean for Our Communities?

We need to care for ourselves and other people in our communities. We need to check in on how people are feeling and take extra steps to care for ourselves and our loved ones. People within our communities should reach out for professional help to cope with anxiety and depression. Our finding might also mean that we have much to learn about coping in stressful situations from people who are diagnosed with depression.

What’s Next?

We are going to learn more about the impact of COVID-19 on the health of our LGBTQ+ communities by doing more studies on the impact of COVID-19.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Flentje, A. Obedin-Maliver, J., Lubensky, M.E., Dastur, Z., Neilands, T., Lunn, M. R. (In press). Depression and anxiety changes among sexual and gender minority people coinciding with onset of COVID-19 pandemic. Journal of General Internal Medicine. (2020). https://doi.org/10.1007/s11606-020-05970-4

Official Title:

Eating disorder attitudes and disordered eating behaviors as measured by the eating disorder examination questionnaire (EDE-Q) among cisgender lesbian women

What Did We Do?

We asked 563 cisgender lesbian women participants in The PRIDE Study to fill out a widely used survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers. We looked at their scores in the following categories: restraint, eating concern, weight concern, shape concern, and global score.

What Was New, Innovative, or Notable?

Historically, researchers have thought that lesbian women cared less about thin body ideals and body image issues than their heterosexual counterparts. This is the first study to explore this theory using the average scores of this widely used eating disorder survey among lesbian women.

What Did We Learn?

Lesbian women engaged in following behaviors at least once in past 28 days: dieting (14%), eating large amounts of food in a short period of time (9%), exercising a lot (5%), forcing themselves to vomit (0.4%), using medicines for constipation to encourage bowel movements for weight loss (0.4%). Scores for weight concern and shape concern were higher than for the other categories. Given that 63.4% of the sample had a body mass index (BMI) considered overweight or obese, weight and shape concerns may be normal for this group. Unlike with findings in other populations, BMI was not associated with restraint in this group.

What Does This Mean for Our Communities?

These results will help healthcare providers and researchers to use this survey with lesbian women in their practices.

What’s Next?

We want to understand more about body image and eating disorders in other sexual and gender minority communities.

Action Step:

See: pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata JM, Murray SB, Flentje A, Compte EJ, Schauer R, Pak EH, Capriotti MR, Lubensky ME, Lunn MR, Obedin-Maliver J. Eating disorder attitudes and disordered eating behaviors as measured by the eating disorder examination questionnaire (EDE-Q) among cisgender lesbian women. Body Image. https://doi.org/10.1016/j.bodyim.2020.06.005

Official Title:

What sexual and gender minority people want researchers to know about sexual orientation and gender identity questions: a qualitative study

What Did We Do?

Questions about sexual orientation and gender identity are important but aren’t asked enough in research studies. Current questions don’t meet the needs of LGBTQ+ people. Researchers from The PRIDE Study held 9 focus groups in the San Francisco Bay Area and 19 one-on-one interviews all over the country to ask LGBTQ+ people: how are current sexual orientation and gender identity questions not meeting your needs and how could they be improved?

What Was New/Innovative/Novel?

This is the first time such a large group of LGBTQ+ people have been asked for their views on questions about sexual orientation and gender identity and how these questions could be improved.

What Did We Learn?

We learned that current questions often didn’t allow for fluidity in sexual orientation and gender identities, and questions often didn’t capture various identities. We also learned that questions also weren’t specific enough. For example:

-When researchers ask about sexual orientation, are they asking about our identity, who we are sleeping with, or who we are attracted to?

- When researchers ask about gender, are they asking about gender identity, gender expression (clothing, hair, makeup, etc.), or sex assigned at birth?

The article suggests ways in which sexual orientation and gender identity questions could be improved based on feedback from focus groups and interviews.

What Does This Mean for Our Communities?

Understanding these views could improve how current sexual orientation and gender identity questions are designed, improve the experience of LGBTQ+ people in research, and make sure LGBTQ+ people are more accurately represented in research studies.

What’s Next?

We now need to find out how LGBTQ+ people actually respond to these updated questions and support their use in research studies.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Suen, L.W., Lunn, M.R., Katuzny, K. et al. What Sexual and Gender Minority People Want Researchers to Know About Sexual Orientation and Gender Identity Questions: A Qualitative Study. Arch Sex Behav (2020).

https://doi.org/10.1007/s10508-020-01810-y

Official Title:

Abortion experiences and preferences of transgender, nonbinary, and gender-expansive people in the United States

What Did We Do?

We enrolled transgender, nonbinary, and gender-expansive (TGE) people 18 years and older, who were assigned female or intersex at birth in an online survey. We asked them about their abortion experiences, and feedback on how to make abortion care better for pregnant TGE people.

What Was New/Innovative/Novel?

These are the first study results on what kinds of abortions TGE people have had, what TGE people want and need in abortion care, and how researchers and health care providers can make abortion experiences better for TGE people.

What Did We Learn?

About one in ten TGE participants reported having ever been pregnant. More than one in five of the pregnancies they reported ended in abortion. Of the abortions that participants reported, most were surgical abortions. When all participants (regardless if they had already had an abortion) were asked what kind of abortion they would prefer, most said they would choose an abortion with pills (medication abortion) instead of a surgical abortion, because it seemed more private and comfortable. Almost one in three people did not know what kind of abortion they would choose, if faced with that decision.

What Does This Mean for Our Communities?

These study results may help TGE people get better abortion care. The study shows that TGE people might find it difficult to get the types of abortion that they want, and that they might need more information about what their abortion options are.

What’s Next?

We need to use these data to teach doctors, nurses, and other health care providers about how to improve abortion care and make their clinics more welcoming for TGE people. Some ideas were to use gender-neutral intake forms and create privacy options for TGE patients. Also, many participants did not know what kind of abortion they would want; TGE people need to be provided with information about abortion options.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Moseson H, Fix L, Ragosta S, Forsberg H, Hastings J, Stoeffler A, Lunn MR, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J. Abortion experiences and preferences of transgender, nonbinary, and gender-expansive people in the United States. American Journal of Obstetrics and Gynecology (2020). DOI: https://doi.org/10.1016/j.ajog.2020.09.035

Official Title:

Pregnancy intentions and outcomes among transgender, nonbinary, and gender-expansive people assigned female or intersex at birth in the United States: results from a national, quantitative survey

What Did We Do?

We asked TGE people from all over the United States about their experiences with pregnancy and if they want to get pregnant in the future.

What Was New/Innovative/Novel?

This is the largest report on pregnancies among TGE people. These findings can help health care providers, researchers and community members understand pregnancy outcomes and pregnancy wishes among TGE people.

What Did We Learn?

TGE people plan for and have pregnancies. Of the 1,694 TGE people who answered questions on reproductive history, 210 (12%) had ever been pregnant. Most of these pregnancies ended in live birth (39%), miscarriage (33%) or abortion (21%). Fifteen pregnancies occurred after starting testosterone and four occurred while taking it. Among all participants, 11% wanted to get pregnant and 11% felt “at risk” for a pregnancy they did not want.

What Does This Mean For Our Communities?

More support in the form of contraceptive counseling and access is needed for TGE people who feel “at risk” for a pregnancy that they do not want, as well as preconception counseling and access to fertility planning for those who want to get pregnant in the future.

What’s Next?

Health care providers should not assume what TGE patients want in relation to pregnancy and family planning. Providers should counsel TGE people broadly on planning for or avoiding pregnancy, depending on what people want for their own lives. More research should be done to better understand these pregnancy experiences and how they vary by individual characteristics.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Moseson H, Fix L, Hastings J, Stoeffler A, Lunn MR, Flentje A, Lubensky ME, Capriotti MR, Ragosta R, Forsberg H, Obedin-Maliver J. (2020) Pregnancy intentions and outcomes among transgender, nonbinary, and gender-expansive people assigned female or intersex at birth in the United States: results from a national, quantitative survey. IJTH Special Issue: Trans Pregnancy: Fertility, reproduction and body autonomy. https://doi.org/10.1080/26895269.2020.1841058

Official Title:

Community Norms for the Eating Disorder Examination Questionnaire (EDE-Q) among Cisgender Bisexual Plus Women and Men

What Did We Do?

Bisexual plus (Bi+) people include those with bisexual, pansexual, and polysexual sexual orientations. We asked bi+ women and men in The PRIDE Study to fill out a widely used survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers for dieting, eating concerns, weight concerns, shape concerns, and general eating disorder attitudes.

What Was New, Innovative, or Novel?

This is the first study to explore eating disorder attitudes and behaviors in bi+ women and men.

What Did We Learn?

Bi+ participants engaged in following behaviors at least once in a 28-day span:

Dieting:

Bi+ women 19%

Bi+ men 24%

Eating large amounts of food in a short period of time:

Bi+ women 11%

Bi+ men 11%

Exercising a lot:

Bi+ women 5%

Bi+ men 5%

Forcing themselves to vomit:

Bi+ women 2%

Bi+ men 0%

Using laxatives (medicines for constipation to encourage bowel movements) for weight loss:

Bi+ women 0.4%

Bi+ men 1%

Bi+ men reported higher concerns about their weight than men in the general population. There were no significant differences in eating disorder attitudes or behaviors between bi+ women and men.

What Does This Mean For Our Communities?

These results can help healthcare providers understand eating disorder attitudes and behaviors in bi+ women and men.

What’s Next?

We want to understand more about attitudes and behaviors about being muscular in sexual minority communities.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata, J. M., Compte, E. J., Murray, S. B., Schauer, R. M., Pak, E. H., Capriotti, M. R., Lubensky, M. E., Lunn, M. R., & Obedin-Maliver, J. (2020). Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among cisgender bisexual plus women and men. Eating and Weight Disorders. https://doi.org/10.1007/s40519-020-01070-8

Official Title:

Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among gender-expansive populations

What Did We Do?

Gender-Expansive (GE) people do not identify as being a man or a woman. GE participants in The PRIDE Study completed a survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers for dieting, eating concerns, weight concerns, and shape concerns, as well as general eating disorder attitudes.

What Was New, Innovative, or Notable?

This is the first study to explore eating disorder attitudes and behaviors in GE people.

What Did We Learn?

Nearly one in four GE people ate less food to influence their weight in the past 28 days. Thirteen percent over ate food to an unhealthy level in a short time in the past 28 days. Attitudes and behaviors were nearly the same based on sex assigned at birth. GE people had the same levels of eating disorders as transgender men and ate less food and had less concerns about shape than transgender women.

What Does This Mean for Our Communities?

These results can help health care providers understand eating disorder attitudes and behaviors in GE people.

What’s Next?

We want to understand more about attitudes and behaviors about being muscular in gender minority communities.

Action Step:

See: pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata, J. M., Compte, E. J., Cattle, C. J., Flentje, A., Capriotti, M. R., Lubensky, M. E., Murray, S. B., Obedin-Maliver, J., & Lunn, M. R. (2020) 8:74. Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among gender-expansive populations. Journal of Eating Disorders. https://doi.org/10.1186/s40337-020-00352-x

Official Title:

Understanding Co-Occurring Depression Symptoms and Alcohol Use Symptoms among Cisgender Sexual Minority Women

What did we do?

Lesbian, bisexual, and queer women drink more alcohol and experience more depression than heterosexual women (Cochran, Greer, & Mays, 2003; McCabe et al., 2009; Pakula, Carpiano, Ratner, & Shoveller, 2016). It is important that we better understand why this happens, so mental health providers can better help. This study tries to help us better understand how people cope with discrimination and which coping strategies make their drinking and depression better and worse. For people who experience discrimination, we tested if drinking and avoiding feelings make depression and problems related to drinking worse, and talking to friends makes depression and problems related to drinking better.

What was new, innovative, or notable?

There isn’t very much research that has looked at how lesbian, bisexual, and queer women cope, and the relationships between discrimination, depression, and drinking.

What did we learn?

We found that people who had experienced discrimination who talked to friends were less depressed. We also found that drinking alcohol and trying to avoid feelings can make depression worse.

What does this mean for our communities?

It is unjust that so many members of the LGBTQ+ community experience discrimination. It is important for us to have tools to reduce the impact of discrimination on LGBTQ+ lives. Based on this study, we recommend talking to friends about experiences of discrimination, rather than drinking or trying to avoid our feelings.

What’s next?

We will try to share this research with members of the LGBTQ+ community and people who support them. Because our first study tested these ideas on a sample of cisgender women, we will now try to understand how discrimination, drinking, and depression are related for transgender women.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

McGeough, B.L., Aguilera, A., Capriotti, M.R., Obedin-Maliver, J., Lubensky, M.E., Lunn, M.R. & Flentje, A. (2021). Understanding co-occurring depression symptoms and alcohol use symptoms among cisgender sexual minority women. Journal of Gay & Lesbian Social Services. DOI: www.doi.org/10.1080/10538720.2021.1886214

References:

Cochran, S. D., Greer, J., & Mays, V. M. (2003). Prevalence of mental disorders, psychological distress, and mental health services use among lesbian, gay, and bisexual adults in the United States. Journal of Consulting and Clinical Psychology, 71(1), 53–61. https://doi.org/10.1037/0022-006X.71.1.53

McCabe, S. E., Hughes, T. L., Bostwick, W. B., West, B. T., & Boyd, C. J. (2009). Sexual orientation, substance use behaviors and substance dependence in the United States. Addiction (Abingdon, England), 104(8), 1333–1345. https://doi.org/10.1111/j.1360-0443.2009.02596

Pakula, B., Carpiano, R. M., Ratner, P. A., & Shoveller, J. A. (2016). Life stress as a mediator and community belonging as a moderator of mood and anxiety disorders and co-occurring disorders with heavy drinking of gay, lesbian, bisexual, and heterosexual Canadians. Social Psychiatry and Psychiatric Epidemiology, 51(8), 1181–1192.

https://doi.org/10.1007/s00127-016-1236-1

Official Title:

Abortion attempts without clinical supervision among transgender, nonbinary and gender-expansive people in the United States

What Did We Do?

We asked 1,694 transgender, nonbinary, and gender-expansive (TGE) people from across the United States about their sexual and reproductive health history, including if they had tried to end a pregnancy on their own, without information or support from a healthcare provider. Transgender describes someone who identifies as a gender different from that most commonly associated with their sex assigned at birth. Nonbinary is a term for someone who does not identify as only a man or a woman, but may identify as both or neither. Gender-expansive is an umbrella term for someone who may identify with and express their gender in many ways outside of what is expected of them.

What Was New, Innovative, or Novel?

These results are based on a large number of TGE people’s experiences and can help make abortion safer and more easily available.

What Did We Learn?

Of 1,694 TGE participants, 210 had ever been pregnant. More than 1 in every 3 TGE people who were ever pregnant said they had considered trying to end a pregnancy on their own. Nearly 1 in 5 of those ever pregnant tried to end a pregnancy on their own. Fifteen participants reported using herbs (38%), 10 reported physical trauma (25%), eight used vitamin C (20%), and seven used other substances (18%). Some reasons for trying to end a pregnancy on their own included cost, legal barriers, and discrimination. Participants also wanted more privacy.

What Does This Mean For Our Communities?

About 1 in every 5 TGE people (19%) who had been pregnant tried to end a pregnancy on their own, without support from a health care provider. Reasons people gave included not being able to access care through a health care provider and/or because they wanted more privacy and control over the abortion than a clinic could provide. Many of the methods people used were either ineffective (not likely to work), or unsafe, or both. People need access to information on how to safely end a pregnancy without support from a health care provider. This information can be found through websites including www.AbortionOnOurOwnTerms.org, Plan C, Aid Access, and mobile apps such as Euki.

What’s Next?

More work is needed to ensure cost, legal restrictions, information barriers, and discrimination do not keep TGE people from having safe and effective abortions, with or without a health care provider. Health care providers and advocates should provide TGE people with information to safely and effectively manage their abortions with or without clinical support. Making these changes, may allow TGE people to access safe and effective abortion options that are welcoming and respectful of their identities.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Moseson H, Fix L, Gerdts C, Ragosta S, Hastings J, Stoeffler A, Goldberg EA, Lunn MR, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J. (2021) Abortion attempts without clinical supervision among transgender, nonbinary and gender-expansive people in the United States. BMJ Sexual & Reproductive Health. https://doi.org/10.1136/bmjsrh-2020-200966

Official Title:

Psychometric Evaluation of the Muscle Dysmorphic Disorder Inventory (MDDI) among Cisgender Gay Men and Cisgender Lesbian Women

What Did We Do?

Muscle dysmorphia means that someone is worried about not being muscular enough. We asked gay men and lesbian women in The PRIDE Study to fill out a widely used survey about this issue in order to see if the survey is valid in gay men and lesbian women.

What Was New, Innovative, or Notable?

This was the first study to use these survey questions with gay men and lesbian women.

What Did We Learn?

We found that this issue about muscularity has three parts for gay men and lesbian women: 1) a desire to be bigger and more muscular, 2) a dissatisfaction with the way their body looks, and 3) problems with normal life functions.

What Does This Mean For Our Communities?

This survey is appropriate for use in gay men and lesbian women. This survey helps us understand gay men and lesbian women better. These results can help providers and researchers understand the muscle-related problems that gay men and lesbian women are having and ask better questions to care for them better.

What’s Next?

We want to study this issue in bisexual men and women.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends, family, and providers.

Citation:

Compte EJ, Cattle CJ, Lavender JM, Murray SB, Brown TA, Capriotti MR, Flentje A, Lubensky M, Obedin-Maliver J, Lunn MR, Nagata JM. 2021. Psychometric evaluation of the Muscle Dysmorphic Disorder Inventory (MDDI) among cisgender gay men and cisgender lesbian women. Body Image. https://doi.org/10.1016/j.bodyim.2021.04.008

Official Title:

Community norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among cisgender sexual minority men and women

What Did We Do?

Muscle dysmorphia means that someone is worried about not being muscular enough. We asked gay, lesbian, and bisexual plus people (those who identify as bisexual, pansexual, and/or polysexual) in The PRIDE Study to fill out a widely used survey about this issue.

What Was New, Innovative, or Notable?

This is the first study to show the average scores of this survey in gay, lesbian, and bisexual plus people.

What Did We Learn?

This study helps us understand the experience of perceiving oneself as ‘not muscular enough’ among gay, lesbian, and bisexual plus people. There were no significant differences among gay and bisexual plus men, or between lesbian and bisexual plus women.

What Does This Mean For Our Communities?

These results can help providers and researchers understand the muscle-related problems that gay, lesbian, and bisexual plus people experience to care for them better.

What’s Next?

We want to study this issue in transgender men and women and people whose gender identity is non-binary (does not identify as either "man" or "woman").

Action Step:


See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata JM, Compte EJ, Cattle CJ, Lavender JM, Brown TA, Murray SB, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J, Lunn MR. 2021. Community norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among cisgender sexual minority men and women. BMC Psychiatry. https://doi.org/10.1186/s12888-021-03302-2

Official Title:

Minority Stress, Structural Stigma, and Physical Health among Sexual and Gender Minority Individuals: Examining the Relative Strength of the Relationships

What Did We Do?

This study looked at which types of stigma and discrimination (the unfair treatment of people) are most strongly related to worse overall physical health among LGBTQ+ people. The different types of stigma and discrimination that we looked at were: experiences of discrimination (for example, being mistreated in a job because of being LGBTQ+), experiences of LGBTQ+-related violence, living or having grown up in a community where LGBTQ+ people weren’t safe, living or growing up in a community where LGBTQ+ people weren’t accepted, outness about one’s LGBTQ+ identities, stigmatizing beliefs about LGBTQ+ people, and laws and policies that protect or hurt LGBTQ+ people within the state in which they live. We looked at this separately among subgroups of LGBTQ+ people and among LGBTQ+ people of different races and ethnicities.

What was new, innovative, or notable?

This is the first time (that we know of) that transgender and gender-expansive or non-binary people (people who do not identify with the traditional gender roles of “male” and “female”) were included in a study like this. This study also compared the different types of discrimination and stigma to each other, to identify which stress experiences for LGBTQ+ people are the most important to think about when we try to improve the health of our communities.

What did we learn?

As we expected, experiencing more stigma and discrimination was related to worse physical health among LGBTQ+ people. Safe communities had the strongest relationships with better physical health among most of the groups we studied.

Living in a community that is safe for LGBTQ+ people had the strongest relationship with better physical health among cisgender sexual minority women, transmasculine people, American Indian or Alaskan Native LGBTQ+ people, Asian LGBTQ+ people, and White LGBTQ+ people.

Having grown up in a community that was safe for LGBTQ+ people had the strongest relationship with physical health for gender-expansive or non-binary people and Black, African American, or African LGBTQ+ people.

Having experienced LGBTQ+-related violence was most strongly related to worse physical health among transfeminine people.

Living in a place where LGBTQ+ people were accepted had the strongest relationship with better physical health among Hispanic, Latino, or Spanish LGBTQ+ people.

Experiences of discrimination had the strongest relationship with poorer physical health among cisgender sexual minority men.

What Does This Mean for Our Communities?

This study helps us understand which stress experiences for LGBTQ+ people are the most important to think about when we try to improve the health of our communities. Among most LGBTQ+ people, safety was most strongly related to physical health, suggesting that increasing safety in our communities should be a high priority. While we knew that safety was important before, now we have research to show that community safety is most strongly related to physical health among most groups of LGBTQ+ people.

What’s Next?

We are going to try to figure out some of the ways that our biology is different based on our experiences of stigma and discrimination. We are doing this through a new study, which will look at how stigma and discrimination experiences are related to behavior, the way people feel, and their biology. We will look at how these stress experiences over time are related to substance use and mental health (like anxiety and depression) and to changes in the way DNA works (DNA methylation).

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Flentje, A., Clark, K.D., Cicero, E., Capriotti, M. R., Lubensky, M.E., Sauceda, J., Neilands, T. B., Lunn, M. R., Obedin-Maliver, J. (In press). Minority stress, structural stigma, and physical health among sexual and gender minority individuals: Examining the relative strength of the relationships. Annals of Behavioral Medicine. https://doi.org/10.1093/abm/kaab051

Official Title:

Community Norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among Gender Minority Populations

What Did We Do?

Muscle dysmorphia means that someone is concerned about not being muscular enough. We asked transgender men, transgender women, and gender-expansive people (people who have genders that are not just binary – meaning not just woman or man, for example, and people who are genderqueer or gender non-binary) in The PRIDE Study to fill out a widely used survey about this issue.

What Was New, Innovative, or Notable?

This is the first study to show the average scores of this survey in transgender men, transgender women, and gender-expansive people.

What Did We Learn?

This study helps us understand the experience of people seeing themselves as ‘not muscular enough’. Transgender men had the highest muscle dysmorphia symptoms, followed by gender-expansive people, then transgender women.

What Does This Mean for Our Communities?

These findings can help providers and researchers understand the muscle-related problems that transgender and gender-expansive people experience to care for them better.

What’s Next?

We will study if transgender and gender-expansive people use muscle-building supplements and drugs, such as steroids or creatine.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata JM, Compte EJ, McGuire FH, Lavender JM, Brown TA, Murray SB, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J, Lunn MR. Community norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among gender minority populations. Journal of Eating Disorders 9, 87 (2021). https://doi.org/10.1186/s40337-021-00442-4

Official Title:

Online health information seeking, health literacy, and human papillomavirus vaccination among transgender and gender diverse people

What Did We Do?

This study compared transgender and gender diverse (TGD) people with cisgender people. TGD people’s gender may not match their sex assigned at birth; cisgender people’s gender generally matches their sex assigned at birth.

We wanted to study two things: We wanted to know whether TGD people are more or less likely than cisgender people to get a shot to prevent HPV – a sexually transmitted infection that can cause warts and cancer. We also wanted to know if there is a connection between using the Internet and getting the HPV shot.

We asked The PRIDE Study participants the following questions:

Do you use the Internet to search for health information?

Do you use the Internet to search for information about shots?

Do you use social media like Facebook, Instagram, or others?

What Was New, Innovative, or Notable?

This was the first time a large number of TGD people were asked whether they had ever received the HPV shot. This was also the first time we asked TGD people how easy it is for them to search the Internet for health information.

What Did We Learn?

Overall, TGD people said they got the HPV shot more often than cisgender people. Surprisingly, TGD people got the HPV shot less than cisgender people when they had searched the Internet for information about shots. But TGD people got the HPV shot more often than cisgender people when they used social media like Facebook or Instagram.

In addition, there was no connection between a person’s race/ethnicity or education and getting the HPV shot. TGD people who were 27 and younger were less likely to get the HPV shot than cisgender people in the same age group. What Does This Mean for Our Communities?

These results may help health care providers and researchers understand how TGD people may use the Internet or social media to get health information. This knowledge could help us develop new ways to encourage TGD people to get a shot to prevent getting HPV and prevent them from getting warts and cancer.

What’s Next?

A future study will find out how TGD people use the Internet to search for health information and whether it’s different from how cisgender people use the Internet to search for health information. We also want to know how TGD people use social media like Facebook and Instagram to get health information.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Pho, A.T., Bakken, S., Lunn, M.R., Lubensky, M.E., Flentje, A., Dastur, Z., Obedin-Maliver, J. (In press). 2021. Online health information seeking, health literacy, and human papillomavirus vaccination among transgender and gender diverse people. Journal of the American Medical Informatics Association. https://doi.org/10.1093/jamia/ocab150

Official Title:

From ‘shark-week’ to ‘mangina’: An analysis of words used by people of marginalized sexual orientations and/or gender identities to replace common sexual and reproductive health terms

What Did We Do?

We asked cisgender sexual minority women (CSMW) and transgender, non-binary, and gender-expansive (TGE) people from all over the United States about the words they use to describe sexual and reproductive health processes and their body parts. Cisgender sexual minority women describes women who were assigned female sex at birth and who identify as asexual, bisexual, lesbian, pansexual, queer, and/or another sexual orientation outside of exclusively straight/heterosexual. Transgender describes someone who identifies as a gender different from that most commonly associated with their sex assigned at birth. Nonbinary describes someone who does not identify as only a man or a woman, but may identify as both or neither, or a multiplicity of genders. Gender-expansive is an umbrella term for someone who may identify with and express their gender in many ways outside of what is expected of them. Survey respondents were provided with definitions for 9 common sexual and reproductive health terms for body processes, activities, and body parts. The terms we asked about were: abortion, birth control, breasts, penis, period, pregnant, sperm, uterus, and vagina. They were asked if they use the term. If they did not use the term, they were asked to provide their own word.

What Was New, Innovative, or Notable?

This was the first study, to our knowledge, to directly measure whether sexual and gender minority people use medical terms to talk about their sexual and reproductive health, and if not, what words they use. The researchers designed the study in an innovative way, where the words/phrases that respondents provided actually replaced the medical sexual and reproductive health terms throughout the survey. This allowed participants to customize their survey while allowing us to learn more about their sexual and reproductive health with familiar language.

What Did We Learn?

CSMW and TGE respondents use a diversity of words to describe their bodies and experiences. Among 1,704 TGE and 1,370 CSMW respondents, 613 (36%) TGE respondents and 92 (7%) CSMW respondents replaced at least one medical term with their own terms. Some of the most commonly used words among TGE respondents were: “chest” for breasts (n=369, 72% of replacement words), “front-hole” for vagina (n=96, 33% of replacement words), and “dick” for penis (n=47, 45% of replacement words). Many (23%) replacement words/phrases were only used by a single respondent. For example, one person provided the word “Harold” for uterus and another provided “freedom!! (in Scottish accent)” for abortion. TGE respondents also said that word-use depended on the context, that some terms did not apply to them, or that they did not have a replacement word/phrase. For example, one respondent for the word vagina responded, “depends on the context- if it’s during sexytimes I usually avoid using the word. If I’m talking about my period I’m okay saying vagina.” Another respondent for the word uterus responded, “I’ve never had a reason to think of what to call it honestly. The only time I ever bring up that area is when talking about a hysterectomy."

What Does This Mean for Our Communities?

Sexual and reproductive health terms used in clinical and research settings can cause discomfort and dysphoria (a feeling of anxiety and dissatisfaction) among some sexual and gender minority (SGM) people. Attention to word-use by providers and researchers could increase the quality of clinical and research experiences for SGM people. Providers and researchers should ask people what words they would like to use to refer to their bodies and experiences.

What’s Next?

To build upon this work, our team is studying alternatives to asking about sex assigned at birth and gender for screening purposes in clinical care. Specifically, we developed an anatomical organ inventory with transgender, non-binary, and gender-expansive community advisory board members. We are now testing this organ inventory to see if it may be a more accurate and affirming way to assess patient eligibility for certain healthcare services. This organ inventory would be provided alongside a patient-provided language form (like the one used in this study) to make health care experiences more relevant and patient-centered.

Action Step:

Visit pridestudy.org/study for more information and to share this study with your friends and family. Also visit inclusivesrh.com to learn more about Ibis’s work and browse our community-provided resources on sexual and reproductive health relevant to transgender, nonbinary, gender-expansive, and intersex people.

Citation:

Ragosta S, Obedin-Maliver J, Fix L, Stoeffler A, Hastings J, Capriotti MR, Flentje A, Lubensky ME, Lunn MR, Moseson H (2021) From ‘shark-week’ to ‘mangina’: an analysis of words used by people of marginalized sexual orientations and/or gender identities to replace common sexual and reproductive health terms, Health Equity 5:1, 1–11, DOI: doi.org/10.1089/heq.2021.0022

Official Title:

Appearance and performance-enhancing drugs and supplements (APEDS): Lifetime use and associations with eating disorder and muscle dysmorphia symptoms among cisgender sexual minority people

What Did We Do?

We studied use of muscle-building supplements among gay, lesbian, and bisexual plus people (those who identify as bisexual, pansexual, and/or polysexual) in The PRIDE Study. We asked about supplements like protein, creatine, and steroids which can be used to build muscle.

What Was New, Innovative, or Notable?

This is one of the first studies to examine how the use of muscle-building supplements is related to eating disorders and muscle dysmorphia (when someone is worried about not being muscular enough) in gay, lesbian, and bisexual plus people.

What Did We Learn?

Muscle-building supplement use was common among gay men (44%), bisexual plus men (42%), lesbian women (29%), and bisexual plus women (30%). Muscle-building supplement use was linked to eating disorder and muscle dysmorphia symptoms in all groups.

What Does This Mean for Our Communities?

Muscle-building supplement use is common in gay, lesbian, and bisexual plus people. Discussions about muscle-building supplement use could further explain potential reasons for using these supplements in these communities. Future research could investigate potential health impacts of muscle-building supplements among gay, lesbian, and bisexual plus people.

What’s Next?

We will study the use of muscle-building supplements in transgender people.

Action Step:

See pridestudy.org/research for more information and to share this study with your friends and family.

Citation:

Nagata JM, McGuire FH, Lavender JM, Brown TA, Murray SB, Compte EJ, Cattle CJ, Flentje A, Lubensky ME, Obedin-Maliver J, Lunn MR. Appearance and performance-enhancing drugs and supplements (APEDS): Lifetime use and associations with eating disorder and muscle dysmorphia symptoms among cisgender sexual minority people. Eating Behaviors, 2022, 101595, ISSN 1471-0153, https://doi.org/10.1016/j.eatbeh.2022.101595.

Official Title:

Do Ask, Tell, and Show: Contextual Factors Affecting Sexual Orientation and Gender Identity Disclosure for Sexual and Gender Minority People

What Did We Do?

Questions about sexual orientation and gender identity (SOGI) are important but aren’t asked frequently enough in research studies. Contextual factors, like how the questions are asked or the situation (e.g., being asked at a doctor’s visit or during research study related to health) can affect how sexual and gender minority (SGM)/LGBTQ+ people respond to SOGI questions. Researchers from The PRIDE Study held 9 focus groups in the San Francisco Bay Area and 19 one-on-one interviews all over the country to ask LGBTQ+ people: what are some ways that context can affect how you respond to SOGI questions?

What Was New, Innovative, or Notable?

This is one of the few studies to examine how situations and contexts can affect how LGBTQ+ people respond to SOGI questions in health and research settings.

What Did We Learn?

We learned that for LGBTQ+ participants, it was important to understand why SOGI questions were being asked, and why they were relevant to the situation. Our findings suggest that researchers could increase comfort with answering SOGI questions by including information on why SOGI information was being collected and how this information would be used.

We also learned that when LGBTQ+ participants answer questions about their sexual orientation and gender identity (SOGI), environmental cues (like posters & magazines that feature LGBTQ+ people, gender neutral bathrooms, rainbows in clinics) can communicate that it’s a safe context where their answers won’t be used to discriminate against them. So, researchers can create more inclusive and welcoming research environments by partnering with LGBTQ+ community organizations; ensuring recruitment materials feature LGBTQ+ people of various backgrounds and use inclusive language; hiring and valuing LGBTQ+ staff; and talking about and sharing pronouns.

What Does This Mean for Our Communities?

Recommending ways in which researchers can create more inclusive and welcoming research environments can help increase LGBTQ+ community participation in research studies. Developing these best practices can also help us to accurately collect SOGI data.

What’s Next?

Exploring what researchers are currently doing when collecting data and what they can do to improve study participation among LGBTQ+ individuals.

Action Step:

See pridestudy.org/research for more information and to share this study with your friends and family.

If you’re interested in conducting research related to LGBTQ+ health, apply to collaborate with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Suen LW, Lunn MR, Sevelius JM, Flentje A, Capriotti MR, Lubensky ME, Hunt C, Weber S, Bahati M, Rescate A, Dastur Z, Obedin-Maliver J. Do Ask, Tell, and Show: Contextual Factors Affecting Sexual Orientation and Gender Identity Disclosure for Sexual and Gender Minority People. LGBT Health. 2022,

DOI: 10.1089/lgbt.2021.0159.

Official Title:

Associations among Romantic and Sexual Partner History and Muscle Dysmorphia Symptoms, Disordered Eating, and Appearance- and Performance-Enhancing Drugs and Supplement Use among Cisgender Gay Men

What Did We Do?

We looked at relationship status and number of sexual partners in relation to eating disorders, muscle dysmorphia (when someone is worried about not being muscular enough), and muscle-building supplement use among gay men in The PRIDE Study.

What Was New, Innovative, or Notable?

This is one of the first studies to examine how relationship status (single or not single) and number of sexual partners are related to eating disorders, muscle dysmorphia, and muscle-building supplement use among gay men.

What Did We Learn?

Gay men’s sexual and romantic partner history was not related to eating disorders. However, number of sexual partners was linked to certain muscle dysmorphia symptoms and with muscle-building supplements use including protein supplements, creatine, and steroids. Relationship status (single or not single) was not related to muscle-building supplement use.

What Does This Mean for Our Communities?

Further research and discussions about how sexual partners could be linked to muscularity pressures among gay men could help explain study findings.

What’s Next?

Future research could explore romantic/sexual partner history and body image in other diverse populations.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you’re interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Nagata JM, DeBenedetto AM, Brown TA, Lavender JM, Murray SB, Capriotti MR, Flentje A, Lubensky ME, Cattle CJ, Obedin-Maliver J, Lunn MR. Associations among Romantic and Sexual Partner History and Muscle Dysmorphia Symptoms, Disordered Eating, and Appearance- and Performance-Enhancing Drugs and Supplement Use among Cisgender Gay Men. Body Image. 2022. doi.org/10.1016/j.bodyim.2022.02.004

Official Title:

Appearance and performance-enhancing drugs and supplements (APEDS), eating disorders, and muscle dysmorphia among gender minority people

What Did We Do?

We studied use of muscle-building supplements among transgender men, transgender women, and gender-expansive people (those who do not identify as being exclusively a man or a woman) in The PRIDE Study. We asked about supplements such as protein, creatine, and steroids, which can be used to build muscle.

What Was New, Innovative, or Notable?

This is one of the first studies to examine how the use of muscle-building supplements is related to eating disorders and muscle dysmorphia (when someone is worried about not being muscular enough) in transgender and gender-expansive people.

What Did We Learn?

Muscle-building supplement use was common among transgender men (45%), transgender women (15%), and gender-expansive people (31%). Muscle-building supplement use was linked to symptoms of eating disorders and muscle dysmorphia in transgender men and gender-expansive people.

What Does This Mean for Our Communities?

Muscle-building supplement use is common in transgender men, transgender women, and gender-expansive people. Discussions about muscle-building supplement use could further explain potential reasons for using these supplements in these communities. Future research could look at how using muscle-building supplements among transgender men, transgender women, and gender-expansive people may affect their health.

What’s Next?

We will study the use of muscle-building supplements over time and across age groups.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you’re interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Nagata JM, McGuire FH, Lavender JM, Brown TA, Murray SB, Greene R, Compte EJ, Flentje A, Lubensky ME, Obedin-Maliver J, Lunn MR. Appearance and performance-enhancing drugs and supplements (APEDS), eating disorders, and muscle dysmorphia among gender minority people. Int J Eat Disord. 2022 Mar 30: 1-10. doi: http://doi.org/10.1002/eat.23708

Official Title:

COVID-19 News and Its Association with the Mental Health of Sexual and Gender Minority Adults: A Cross-Sectional Study

What Did We Do?

We looked at data from The PRIDE Study’s Coronavirus Impact Survey. We wanted to determine whether the number of hours participants spent engaging with COVID-19 news was related to experiencing symptoms of anxiety (e.g., feeling nervous or not being able to stop or control worrying) and post-traumatic stress disorder (e.g., having unwanted thoughts, nightmares, or a sense of numbness).

What Was New, Innovative, or Notable?

While previous research has looked at the relationship between news covering traumatic events and people’s mental health, this study is the first to look at this phenomenon among LGBTQ+ people.

What Did We Learn?

We found that greater hours spent engaging with COVID-19 news was related to both greater symptoms of anxiety and greater symptoms of post-traumatic stress disorder among our sample of LGBTQ+ people.

What Does This Mean for Our Communities?

It is important to consider both sides of how news can be a source of information and how it can cause stress. For LGBTQ+ individuals, an awareness of how they engage with news may affect their mental health can help inform the actions they take to keep themselves healthy. Clinicians who work with LGBTQ+ people around mental health can use this information when serving patients and discuss ways to cope if COVID-19 news is affecting their well-being.

What’s Next?

More research is needed to look at different types of news and their association with mental health. For example, is news that people engage with from social media different in how it relates to mental health when compared with news from radio or television sources? There is also more research needed to look at how engaging with news relates to mental health symptoms over a longer period of time to understand this relationship more deeply. We cannot be sure if it is COVID-19 news that is affecting mental health, or if mental health is causing LGBTQ+ folks to engage with COVID-19 news more often.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Clark KD, Lunn MR, Sherman ADF, Bosley HG, Lubensky ME, Obedin-Maliver J, Dastur Z, Flentje A. COVID-19 News and Its Association with the Mental Health of Sexual and Gender Minority Adults: A Cross-Sectional Study. JMIR Public Health Surveill. 2022 May 30; 8(5). doi: http://doi.org/10.2196/34710.

Official Title:

Psychometric Validation of the Muscle Dysmorphic Disorder Inventory (MDDI) among U.S. Transgender Men

What Did We Do?

Muscle dysmorphia means that someone is worried about not being muscular enough. We asked transgender men in The PRIDE Study to fill out a widely used survey in health research about this issue.

What Was New, Innovative, or Notable?

This was the first study to use these survey questions with transgender men.

What Did We Learn?

We found three categories of concerns that transgender men have about muscles:

1) a desire to be bigger and more muscular,

2) a dissatisfaction with the way their body looks, and

3) problems with normal life functions (such as passing up social activities because of their workout schedule).

What Does This Mean for Our Communities?

This survey is appropriate for use with transgender men to understand their concerns around muscles. These results can help providers and researchers understand the muscle-related problems that transgender men are having and ask better questions to provide them with better care.

What’s Next?

We want to study concerns about muscles among transgender women and non-binary people.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Nagata JM, Compte EJ, McGuire FH, Lavender JM, Murray SB, Brown TA, Capriotti MR, Flentje A, Lubensky ME, Obedin-Maliver J, Lunn MR. Psychometric Validation of the Muscle Dysmorphic Disorder Inventory (MDDI) among U.S. Transgender Men. Body Image. 2022 May 30; 42:43-49. doi: https://doi.org/10.1016/j.bodyim.2022.05.001

Official Title:

Psychometric evaluation of the Muscle Dysmorphic Disorder Inventory (MDDI) among gender-expansive people

What Did We Do?

Muscle dysmorphia means that someone is worried about not being muscular enough. Gender-expansive people do not identify as being exclusively a man or exclusively a woman. We asked gender-expansive people in The PRIDE Study to fill out a widely used survey in health research about this issue.

What Was New, Innovative, or Notable?

This was the first study to use these survey questions with gender-expansive people.

What Did We Learn?

We found three categories of concerns that gender-expansive people have about muscles: 1) a desire to be bigger and more muscular, 2) a dissatisfaction with the way their body looks, and 3) problems with normal life functions (such as passing up social activities because of their workout schedule).

What Does This Mean for Our Communities?

This survey is appropriate for use with gender-expansive people to understand their concerns around muscles. These results can help providers and researchers understand the muscle-related problems that gender-expansive people are having and ask better questions to provide them with better care.

What’s Next?

We want to study concerns about muscles among transgender women.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Compte EJ, Cattle CJ, Lavender JM, Brown TA, Murray SB, Capriotti MR, Flentje A, Lubensky ME, Obedin-Maliver J, Lunn MR, Nagata JM. Psychometric evaluation of the Muscle Dysmorphic Disorder Inventory (MDDI) among gender-expansive people. J Eat Disord. 2022 July;10:95. doi: https://doi.org/10.1186/s40337-022-00618-6

Official Title:

Healthcare Mistreatment, State-Level Policy Protections, and Healthcare Avoidance Among Gender Minority People

What Did We Do?

We combined data from The PRIDE Study’s 2018 Annual Questionnaire and state healthcare policy protections from the Movement Advancement Project to understand whether state policies are related to decisions to avoiding healthcare among transgender and non-binary people.

What Was New, Innovative, or Notable?

This is the first study to look at the role of healthcare anti-discrimination policies in a state and whether the presence of those policies is related to the choice to avoid seeking healthcare among transgender and non-binary people.

What Did We Learn?

We found that experiencing poor treatment in healthcare related to one’s gender identity or expression was related to avoiding healthcare services in the past year. We found that the presence of state healthcare anti-discrimination policies did not change the relationship between poor treatment in healthcare and someone avoiding healthcare services in the past year.

What Does This Mean for Our Communities?

Transgender and non-binary people who live in states with healthcare anti-discrimination policies still avoid seeking healthcare. This is concerning because it increases the risk of poor health because illnesses may go untreated and health concerns may go un-diagnosed.

What’s Next?

We need to look at how healthcare anti-discrimination policies are put in place and how individuals and healthcare organizations are held accountable when poor experiences are reported. There is also an opportunity to look at ways to communicate with transgender and non-binary communities about what the policies in their state are and what their options are when poor treatment happens. We also need to look at how healthcare decisions are made by sub-communities within trans communities, such as trans people of color and trans people who may be undocumented.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Clark, K.D., Luong, S., Lunn, M.R., Flowers, E., Bahalkeh, E., Lubensky, M.E., et al. Healthcare Mistreatment, State-Level Policy Protections, and Healthcare Avoidance Among Gender Minority People. Sex Res Social Policy. 2022. Epub 2022, July 15. doi: 10.1007/s13178-022-00748-1

Official Title:

Migraine, migraine disability, trauma, and discrimination in sexual and gender minority individuals

What Did We Do?

We sent a survey to The PRIDE Study participants asking about their experiences with headaches. We split participants into two groups to compare experiences of people with migraines and those with other kinds of headaches. We asked about how strong the headaches were, the effects on their lives, and if participants had access to healthcare for treatment. We also explored if experiences with trauma and discrimination were related to their experiences with migraines.

What Was New, Innovative, or Notable?

This is the first study to specifically look at LGBTQ+ peoples’ experiences with headaches and the connection between trauma and having more severe headaches.

What Did We Learn?

A total of 3,325 participants took the survey; 2,142 (64%) reported experiencing headaches and 1,126 (34%) reported experiencing migraines. On average, most people with migraines reported the strength was moderate or severe and frequent or strong enough to experience migraine-related disability, meaning the migraines affected their ability to participate in work, school, or home life. If they had a history of trauma and discrimination, they also were more likely to have migraines frequent or strong enough to experience migraine-related disability. However, for participants who had a history of depression, anxiety, or post-traumatic stress disorder, those who also had a history of trauma and discrimination were not more likely to experience migraine-related disability compared to those without a history of trauma and discrimination. This suggests that mental health conditions play an important role in experiencing migraine-related disability. Most of the people with migraines had access to a clinic or doctor’s office for healthcare (88%). About 42% of people with migraines wanted to see a specialist. However, 37% of this group had difficulty seeing a specialist, with the most common reason being that their insurance did not approve it. Additional reasons include their primary care doctor did not place the referral, the specialist was not accepting new patients, there were no specialists in their town or city, or the specialist refused to see them.

What Does This Mean for Our Communities?

This study showed that headaches and migraines are common for LGBTQ+ people, similar to the general public. We learned that many LGBTQ+ people with migraines do not have access to a specialist to help provide treatment. This can mean that headaches are not treated as well as they could be, which is important for primary care doctors to be aware of. LGBTQ+ people should also consider how their experiences with trauma, discrimination, and/or mental health conditions may have a connection with their experiences with migraines.

What’s Next?

Further education is needed for healthcare providers and specialists about the experiences of LGBTQ+ people with headaches. Studies about migraines or their treatment should collect information about sexual orientation and gender identity from participants to further understand how LGBTQ+ people are affected. Further research is needed to look at the barriers that LGBTQ+ people face when it comes to accessing healthcare, including looking at other aspects of their identity, such as race, ethnicity, or income level. The connection between depression, anxiety, and post-traumatic stress disorder with migraines should also be looked at further, as treatments for these mental health conditions may also help reduce the effects of migraines.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Rosendale N, Guterman EL, Obedin-Maliver J, Flentje A, Capriotti MR, Lubensky ME, Lunn MR. Migraine, migraine disability, trauma, and discrimination in sexual and gender minority individuals. Neurology Jul 2022, 10.1212/WNL.0000000000200941. https://doi.org/10.1212/WNL.0000000000200941.

Official Title:

Subjective Cognitive Decline Associated with Discrimination in Medical Settings among Transgender and Nonbinary Older Adults

What Did We Do?

We asked participants of The PRIDE Study who were 50 years old and older about their physical and mental health. We included questions about memory, experiences with discrimination, and access to food. We compared data from participants who identified as transgender or non-binary across all sexual orientations against data from cisgender LGBTQ+ participants.

What Was New, Innovative, or Notable?

This is the first study that looked specifically at memory concerns for transgender and nonbinary older adults. Most aging and brain health research doesn’t gather data about gender identity.

What Did We Learn?

Transgender and nonbinary participants were over two times more likely to report discrimination in medical settings compared to cisgender LGBTQ+ participants. We found that transgender and nonbinary older adults who had experienced discrimination in medical settings were five to eight times more likely to report memory problems and also more likely to report concerns with having enough food to eat and other health challenges, such as depression or having poor or fair physical or mental health.

What Does This Mean for Our Communities?

When transgender and nonbinary older adults have memory problems, it is important that they get the care they need but they may be less comfortable going to the doctor or visiting a healthcare facility because of the discrimination they have experienced. As this research shows that transgender and nonbinary older adults are more likely to experience discrimination in medical settings, we hope other researchers and healthcare providers are motivated to create environments and services that are more inclusive and welcoming for them.

What’s Next?

We hope to conduct future research on concerns about memory and thinking for transgender and nonbinary older adults, including how other aspects of their identity, such as race and ethnicity or immigration status, might influence their experiences. We hope future research also considers ways to make medical settings and care more welcoming and inclusive for transgender and nonbinary older adults.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Lambrou NH, Gleason CE, Obedin-Maliver J, Lunn MR, Flentje A, Lubensky ME, Flatt JD. Subjective Cognitive Decline Associated with Discrimination in Medical Settings among Transgender and Nonbinary Older Adults. Int. J. Environ. Res. Public Health. 2022, July 27; 19(15). doi: https://doi.org/10.3390/ijerph19159168.

Official Title:

State-Level Policy Environments, Discrimination, and Victimization among Sexual and Gender Minority People

What Did We Do?

We combined data from The PRIDE Study 2018 Annual Questionnaire and data from the Movement Advancement Project about LGBTQ+-related state policies to understand whether participants’ experiences of discrimination and victimization are related to state policies.

What Was New, Innovative, or Notable?

This study was among the first to look at the relationship between LGBTQ+-related state policies and experiences of discrimination and victimization among subgroups of LGBTQ+ communities and to test whether there was any change in states that had recently increased protections for LGBTQ+ people.

What Did We Learn?

Among cisgender LGBQ+ people and gender expansive people we found a small, but greater, likelihood of experiencing discrimination and victimization in states with more LGBTQ+-related policy protections. We did not find that recent changes in LGBTQ+-related state policies were related to experiencing discrimination or victimization among any of the groups.

What Does This Mean for Our Communities?

Although LGBTQ+ people may live in a state with LGBTQ+-related policy protections, this does not mean that they will not experience discrimination and victimization. Understanding more about these experiences is important for efforts focused on prevention and improving the health and well-being of our communities.

What’s Next?

While LGBTQ+-related state policies are important, there is more work to be done to understand the differences in how these policies are implemented, communicated, and enforced. More research is needed to understand how policy protections are experienced by LGBTQ+ people in their day-to-day lives.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Clark KD, Lunn MR, Lev EM, Trujillo MA, Lubensky ME, Capriotti MR, et al. State-Level Policy Environments, Discrimination, and Victimization among Sexual and Gender Minority People. International Journal of Environmental Research and Public Health. 2022, August 11; 19(16). doi: https://doi.org/10.3390/ijerph19169916.

Official Title:

Understanding the Social and Community Support Experiences of Sexual and Gender Minority Individuals in 12-Step Programs

What Did We Do?

We reviewed answers to open-ended survey questions from 302 LGBTQ+ people in The PRIDE Study who have been involved in 12-Step programs for challenges with substance use, such as Alcoholics Anonymous, to understand what their experiences of community and social support were like in those programs.

What Was New, Innovative, or Notable?

Even though past research has found that people, generally, benefit from the community and social support they receive in 12-Step programs, this is one of the first studies that has specifically considered how LGBTQ+ people experience community and social support in 12-Step programs.

What Did We Learn?

We learned that LGBTQ+ people have diverse experiences in 12-Step programs, with some people having positive experiences, some people having negative experiences, and some people having a combination of both positive and negative experiences. The positive experiences included feeling a sense of community and shared experiences and learning new skills. The negative experiences included discrimination based on being LGBTQ+, violence, harassment, and bullying.

What Does This Mean for Our Communities?

While some LGBTQ+ people may have beneficial experiences in 12-Step programs, others may have harmful experiences. When available, LGBTQ+ people looking to participate in 12-Step programs may find it helpful to attend multiple groups before committing to one to see where they feel supported. If LGBTQ+ people have negative experiences in 12-Step programs, it may be valuable to seek additional support, such as therapy, for healing from those experiences. Some LGBTQ+ people may prefer to find an alternative source of support for challenges with substance use that is not a 12-Step program, such as other substance use recovery programs that use a different approach (e.g., SMART Recovery, LifeRing) or therapy.

What’s Next?

We plan to do more research to better understand which members of the LGBTQ+ community are more likely to have positive and/or negative experiences in 12-Step programs, who is most likely to reduce their substance use through these programs, and how mental health providers can best support LGBTQ+ people who are interested in participating in 12-Step programs.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

McGeough BL, Paceley MS, Zemore SE, Lunn MR, Obedin-Maliver J, Lubensky ME, Flentje, A. Understanding the social and community support experiences of sexual and gender minority individuals in 12-Step programs. J Gay Lesbian Soc Serv. 2023 Jan; https://doi.org/10.1080/10538720.2023.2172759 (The PRIDE Study is working on making this article available open access. We will notify you as soon as it’s available.)

Official Title:

Our pride, our joy: An intersectional constructivist grounded theory analysis of resources that promote resilience in SGM communities

What Did We Do?

We looked at data from The PRIDE Study’s 2018 Annual Questionnaire and analyzed participant’s written responses to three open-ended questions. These questions asked about what brings people joy and what they like most about their sexual orientation and gender identity.

We chose 315 participants from everyone who took the 2018 Annual Questionnaire and responded to at least one of the open-ended questions. After analyzing participant responses, we created main categories and grouped together resources that promote well-being for diverse LGBTQIA+ communities.

What Was New, Innovative, or Notable?

This is one of the first studies that used an approach of focusing on the strengths of LGBTQIA+ communities, used a larger sample size of participants, and had diverse representation of LGBTQIA+ people across race/ethnicity, gender identity, sexual orientation, age, and geographic location.

What Did We Learn?

We created categories for eight types of resources that contribute to LGBTQIA+ community well-being by supporting joy and a positive relationship to one’s LGBTQIA+ identity. These resource categories included: 1) Connecting with others; 2) Creating a network of support through one’s family of origin (e.g., the people who raised you) and/or chosen family (e.g., friends and loved ones you choose to be in your life); 3) Helping others through volunteering and activism; 4) Participating in cultural and spiritual activities; 5) Engaging in activities that bring about happiness and positive emotions; 6) Accessing economic resources, such as safe employment or other financial support; 7) Exploring one’s authentic self, or their own sense of identity; and 8) Making it through hard experiences.

What Does This Mean for Our Communities?

These eight resource categories can help inform approaches for improving LGBTQIA+ community well-being. Some examples include: 1) Creating and strengthening relationships between community members; 2) Providing opportunities for activism and giving back to the community; 3) Promoting access to financial support, healthcare, and gender-affirming care; 4) Providing access for community members to participate in hobbies; and 5) Providing spaces and support for community members to develop positive feelings about their LGBTQIA+ identity and deal with experiences of stigma and discrimination.

What’s Next?

Future projects can benefit from having diverse representation of LGBTQIA+ people across race/ethnicity, gender identity, sexual orientation, age, and geographic location. Future research can also benefit from taking an approach that focuses on the strengths and creativity of LGBTQIA+ communities.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQ+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Edwards OW, Lev E, Obedin-Maliver J, Lunn MR, Lubensky ME, Capriotti MR, Garrett-Walker JJ, Flentje A. Our pride, our joy: An intersectional constructivist grounded theory analysis of resources that promote resilience in SGM communities. PLoS ONE. 18(2): e0280787. https://doi.org/10.1371/journal.pone.0280787.

Official Title:

Investigating the Factor Structure and Measurement Invariance of the Eating Disorder Examination-Questionnaire (EDE-Q) in a Community Sample of Gender Minority Adults from the United States

What Did We Do?

We asked transgender men, transgender women, and gender-expansive people (people who do not identify as being exclusively a woman or man, for example people who are genderqueer or gender nonbinary) in The PRIDE Study to fill out a widely used survey about attitudes and behaviors around eating.

What Was New, Innovative, or Notable?

This was one of the first studies to use these survey questions with transgender men, transgender women, and gender-expansive people.

What Did We Learn?

We found three categories of attitudes associated with eating disorders that transgender men, transgender women, and gender-expansive people experienced: 1) restraining or limiting their diet, 2) concerns about their body shape or weight, and 3) dissatisfaction with their body.

What Does This Mean for Our Communities?

The survey is appropriate for use with transgender men, transgender women, and gender-expansive people. These results can help providers and researchers understand eating disorders and related attitudes in transgender men, transgender women, and gender-expansive people and ask better questions to provide them with better care.

What’s Next?

We want to study other surveys that measure other aspects of eating disorders among transgender men, transgender women, and gender-expansive people.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Nagata JM, Compte EJ, McGuire FH, Brown TA, Lavender JM, Murray SB, Capriotti MR, Flentje A, Lubensky ME, Lunn MR, Obedin-Maliver J. Investigating the Factor Structure and Measurement Invariance of the Eating Disorder Examination-Questionnaire (EDE-Q) in a Community Sample of Gender Minority Adults from the United States. Int J Eat Disord. 2023 [May 10: 1-11]. doi: https://onlinelibrary.wiley.com/doi/full/10.1002/eat.23978.

Official Title:

Acceptability of biospecimen collection among sexual and/or gender minority adults in the United States

What Did We Do?

This study looked at data from 4,982 LGBTQIA+ participants in The PRIDE Study who completed the 2018 Annual Questionnaire to understand their willingness to provide biological samples (saliva, urine, hair, blood, or a cheek swab) for research. We also reviewed responses from 776 participants who shared more around their thoughts and concerns about providing their biological samples for research. We examined the data at a broader level across the entire LGBTQIA+ community and also at a more focused level for subgroups within the LGBTQIA+ community. The subgroups included 1) cisgender men who are not heterosexual/straight, 2) cisgender women who are not heterosexual/straight, 3) gender-expansive people of all sexual orientations, 4) transfeminine people of all sexual orientations, and 5) transmasculine people of all sexual orientations.

What Was New, Innovative, or Notable?

This was one of the first studies to look at the willingness of LGBTQIA+ people to provide biological samples for research. A notable aspect of this study is that we looked at responses by different subgroups within the LGBTQIA+ community, which are often smaller in size and underrepresented in LGBTQIA+ health research, to see if their perspectives were different from those of the broader LGBTQIA+ community.

What Did We Learn?

Most LGBTQIA+ people in our study were willing to provide biological samples for research (61-78%). This varied by biological sample type and by subgroups within the LGBTQIA+ community. Cisgender women who are not heterosexual/straight were less willing to provide some types of biospecimens (blood 54%, urine 63%) than other groups. Cisgender men who are not heterosexual/straight were most willing to provide all five types of biological samples (75-87%). However, LGBTQIA+ people who were older, identified as pansexual, or had an annual income between $20,000-$50,000 per year were more likely to provide biological samples.

LGBTQIA+ people expressed the following concerns about providing biological samples for research: 1) confidentiality and privacy of their personal and biological sample information, 2) who may access their information and how it may be used by researchers, the government, law enforcement, or health insurance companies; 3) knowing more about the research purpose and research team conducting the study before they decide to provide their biological sample(s), and 4) that their LGBTQIA+ identity may unintentionally be disclosed during the biological sample collection process.

What Does This Mean for Our Communities?

These results can help increase the amount of LGBTQIA+ people participating in research studies that use biological samples. In designing future studies, researchers can consider ways to address the specific concerns noted by LGBTQIA+ participants in this study.

Results from this research have already informed decisions about current biological sample collection in The PRIDE Study. For example, in The PRIDE Study’s consent procedures for biological sample studies, participants can decide how their samples are used in the future or if they would like to be contacted for future studies. The PRIDE Study also uses videos to explain the research team and the purpose of the study to potential participants.

What’s Next?

The PRIDE Study is currently conducting in-depth interviews to further explore the willingness of LGBTQIA+ people of color to provide biological samples for research.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Cicero, EC, Lunn, MR, Obedin-Maliver, J, Sunder, G, Lubensky, ME, Capriotti, MR, Flentje, A. Acceptability of biospecimen collection among sexual and/or gender minority adults in the United States. Ann LGBTQ Public Popul Health. 2023 Jun, 2. doi: https://doi.org/10.1891/LGBTQ-2022-0021.

Official Title:

Reports of negative interactions with healthcare providers among transgender, nonbinary, and gender-expansive people assigned female at birth in the United States: results from an online, cross-sectional survey

Note: The journal published the article with a few typographical errors in Tables 3 and 4. Once corrected, some of the numbers in those tables will change slightly (in most cases, by decimal points), but the conclusions of the research will not change. The lead authors have been in dialog with the journal for correcting the errors, but it is taking longer than expected for the journal to make the corrections. For this reason and because we commit to sharing our research findings with participants as soon as possible, we decided to inform everyone of the article now, since it is already published.

What Did We Do?

We surveyed people who are transgender, nonbinary, or gender-expansive (TGE) and assigned female at birth to learn about their experiences with healthcare providers (such as doctors, nurses, and other people who work in healthcare settings).

Participants reported on interactions they had with a healthcare provider in the last year from a list of 16 different types of experiences (such as negative effects from a provider’s opinions about their gender identity or sexuality and a provider asking inappropriate questions about their gender identity). We looked at how different characteristics (such as age, race, or education level) might relate to reporting negative experiences. We also looked at whether receiving gender-affirming care (such as hormones or gender-affirming surgery) and being out as TGE to healthcare providers might relate to having negative experiences.

What Was New, Innovative, or Notable?

This is one of the first studies with a large number of participants to look at the relationship between receiving gender-affirming care and negative interactions with healthcare providers.

What Did We Learn?

Most of the participants (70%) reported at least one negative experience with a healthcare provider in the past year. The most common experiences were being negatively affected by a provider’s opinions about LGBTQIA+ identities and having to educate a healthcare provider about TGE identities to receive proper medical care.

We compared the experiences of TGE people who received gender-affirming care with TGE people who had not received gender-affirming care. The people who received gender-affirming care were more likely to report negative experiences with healthcare providers. They also reported a higher number of negative experiences for 15 out of the 16 experiences included on the survey. Among people who did not receive gender-affirming care, those who were out about their TGE identity to their healthcare provider were more likely to report negative experiences.

What Does This Mean for Our Communities?

Our findings support increasing and improving training about TGE identities among healthcare providers to help reduce bias. Experiences with healthcare providers may be improved by changes to the medical system, such as more inclusive data collection options in medical records and better insurance coverage for gender-affirming care.

Our findings do not mean that coming out as TGE to your healthcare provider or receiving gender-affirming care means you are in any way responsible for any negative experiences you may have.

What’s Next?

We hope to use these findings to raise awareness about the quality of healthcare for TGE people. We also want to use this research to encourage healthcare providers to improve their understanding of TGE identities and gender-affirming care. Future research can explore how these findings might change over time. Additional research can focus on participants with a diverse range of racial/ethnic and socioeconomic backgrounds, as the majority of the people in this study had health insurance and high levels of education and identified as white.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Inman EM, Obedin-Maliver J, Ragosta S, Hastings J, Berry J, Lunn MR, Flentje A, Capriotti MR, Lubensky ME, Stoeffler A, Dastur Z, Moseson H. Reports of negative interactions with healthcare providers among transgender, nonbinary, and gender-expansive people assigned female at birth in the United States: results from an online, cross-sectional survey. Int J Environ Res Public Health. 2023 May, 31; 20 6007. doi: https://doi.org/10.3390/ijerph20116007.

Official Title:

Self-Reported Barriers to Care among Sexual and Gender Minority People with Disabilities: Findings from The PRIDE Study, 2019-2020

What Did We Do?

There is limited knowledge about the barriers that LGBTQIA+ people with disabilities experience while accessing healthcare. Among participants in The PRIDE Study who reported that they live with a disability, we looked at responses from The PRIDE Study’s 2019 Annual Questionnaire regarding access to healthcare (such as having a primary care provider, having health insurance, etc.), delaying healthcare, and insurance coverage.

What Was New, Innovative, or Notable?

This is one of the first studies about the barriers to healthcare experienced by the LGBTQIA+ disability community

What Did We Learn?

In our study, we found that about 31% of LGBTQIA+ people lived with a disability. This was higher than national estimates of about 25%. LGBTQIA+ people with disabilities were more likely to have a primary care provider compared to their non-disabled peers. However, LGBTQIA+ people with disabilities experienced more barriers to healthcare. Specifically, LGBTQIA+ people with disabilities were more likely to delay seeking care, to not have health insurance, and to be unable to obtain care. When we looked at these barriers by different disability groups (physical, mental, intellectual, etc.), they were relatively similar. This tells us that many LGBTQIA+ people with disabilities may experience some sort of healthcare barrier.

We found that LGBTQIA+ people with disabilities delayed seeking care because of mistreatment or disrespect they experienced from providers. They were also denied care or given lower quality medical or mental healthcare compared to those without disabilities.

What Does This Mean for Our Communities?

The findings of this study suggest that barriers to healthcare are happening more often for LGBTQIA+ people with disabilities compared to their non-disabled peers. This means that increasing culturally sensitive training for healthcare providers is necessary to improve the quality of care for LGBTQIA+ people with disabilities. The results showed that addressing appointment availability, the cost of care, insurance coverage, and transportation issues are important items for those who make healthcare policy to focus on. This may improve care for LGBTQIA+ people with disabilities.

What’s Next?

The results of this study can help identify improve public health and healthcare systems by improving access and the quality of care for people in the LGBTQIA+ community. Future work should explore the different experiences of separate groups of people in the LGBTQIA+ disability community. It would also be important to analyze the relationship between health insurance and experiencing barriers to care.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Lamba S, Obedin-Maliver J, Mayo J, Flentje A, Lubensky ME, Dastur Z, Lunn MR. Self-Reported Barriers to Care among Sexual and Gender Minority People with Disabilities: Findings from The PRIDE Study. AJPH. 2023 July, 20: e1-e10. https://ajph.aphapublications.org/doi/epdf/10.2105/AJPH.2023.307333.

(doi: https://doi.org/10.2105/AJPH.2023.307333)

Official Title:

Societal stigma and mistreatment in healthcare among gender minority people: a cross-sectional study

What Did We Do?

We looked at reports that rated a state or area on their environment for LGBTQIA+ people, which we used to represent their local society’s attitudes. We then looked to see if those attitudes were related to any negative healthcare experiences of transgender, nonbinary, and gender diverse people that were reported in The PRIDE Study 2019 Annual Questionnaire.

What Was New, Innovative, or Notable?

This study was among the first to test how existing research measures may reflect society’s attitudes about transgender, nonbinary, and gender diverse people and how they are related to experiences in healthcare.

What Did We Learn?

We did not find a relationship between these existing research measures of society’s attitudes about transgender, nonbinary, and gender expansive people and negative healthcare experiences. However, we found that 18% of transgender, nonbinary, and gender diverse people reported a negative experience in healthcare during the past year and 12.5% had a negative experience in mental healthcare. This is important because mental healthcare experiences are not usually looked at separately from the rest of healthcare experiences.

What Does This Mean for Our Communities?

Transgender, nonbinary, and gender diverse people had negative experiences in both mental healthcare settings and in general healthcare settings. However, society’s attitudes, as measured in our study, were not related to these experiences.

What’s Next?

Society’s attitudes about transgender, nonbinary, and gender expansive people are not well measured in research. Understanding how the community experiences those attitudes is important. Until this improves, other factors that may affect experiences in healthcare should be looked at to improve the experiences of transgender, nonbinary, and gender diverse people.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Clark KD, Lunn MR, Bosse JD, Sevelius JM, Dawson-Rose C, Weiss SJ, Lubensky ME, Obedin-Maliver J, & Flentje A. Societal stigma and mistreatment in healthcare among gender minority people: a cross-sectional study. Int J Equity Health. 2023 Aug, 24; 22(1):162. doi: doi.org/10.1186/s12939-023-01975-7

Official Title:

Investigating the factor structure and measurement invariance of the Eating Disorder Examination Questionnaire (EDE-Q) among cisgender gay men and lesbian women from the United States

What Did We Do?

We asked cisgender gay men and cisgender lesbian women in The PRIDE Study to fill out a widely used survey about attitudes and behaviors around eating.

What Was New, Innovative, or Notable?

This was one of the first studies to use these survey questions with cisgender gay men and cisgender lesbian women in a large sample from across the United States.

What Did We Learn?

We found three categories of attitudes associated with eating disorders that cisgender gay men and cisgender lesbian women experienced: 1) restraining or limiting their diet, 2) concerns about their body shape or weight, and 3) dissatisfaction with their body.

What Does This Mean for Our Communities?

The survey is appropriate for use with cisgender gay men and cisgender lesbian women. These results can help providers and researchers understand eating disorders and related attitudes in cisgender gay men and cisgender lesbian women and ask better questions to provide them with better care.

What’s Next?

We want to study other surveys that measure other aspects of eating disorders among cisgender gay men and cisgender lesbian women.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Compte EJ, McGuire FH, Brown TA, Lavender JM, Murray SB, Capriotti MR, Flentje A, Lubensky ME, Lunn MR, Obedin-Maliver J, Nagata JM. Investigating the Factor Structure and Measurement Invariance of the Eating Disorder Examination Questionnaire (EDE-Q) among Cisgender Gay Men and Lesbian Women from the United States. J Eat Disord. 2023 September, 22; 11 (1): 164-153. doi: doi.org/10.1186/s40337-023-00880-2.

Official Title:

Testosterone Use and Sexual Function among Transgender Men and Gender Diverse People Assigned Female at Birth

What Did We Do?

We looked at sexual health experiences data from The PRIDE Study’s Annual Questionnaires from 2019-2021 provided by transgender men, nonbinary, and gender diverse people who were assigned female sex at birth (AFAB). We also looked at how these sexual health experiences were different or similar among people who were currently using testosterone and those who were not.

What Was New, Innovative, or Notable?

Our study is one of the largest to look at the relationship between testosterone use, sexual health, and experiences of genital pain during sex among transgender men, nonbinary, and gender expansive people AFAB.

What Did We Learn?

There were 1,219 participants in this study. 49% of participants were using testosterone and 42% had never used testosterone. Many (65%) reported having any genital pain during sex in the past 30 days (from when they completed the survey). Compared to people who never used testosterone, individuals who were using testosterone had a higher interest in sexual activity and a higher ability to orgasm. People who were using testosterone were also more likely to report genital pain during sex. We did not see a relationship between current testosterone use and satisfaction with sex life, ability for genitals to produce their own lubrication, or orgasm pleasure.

What Does This Mean for Our Communities?

Testosterone usage for the purpose of affirming one’s gender can be associated with both positive and negative sexual health experiences. Testosterone likely impacts sexual health experiences in complex ways. For example, testosterone may play a role in genital pain during sex for some individuals. At the same time, testosterone may play a role in increased gender affirmation and improved mental health that may be related to more positive sexual experiences.

It is important that a high percentage of participants reported experiencing genital pain during sex because it can have an impact on their well-being and quality of life. However, there are not any treatments for genital pain during sex that have been evaluated specifically for transgender men or nonbinary and gender diverse people AFAB.

What’s Next?

Our long-term goal is to identify effective and acceptable ways to treat or prevent genital pain during sex among transgender, nonbinary, and gender diverse people and to make treatments accessible. Future studies will focus on: learning more about people’s preferences for potential treatments, the ways that people using testosterone address genital pain symptoms, and what they find to be most effective. Lastly, we plan to look at how genital pain during sex impacts the overall quality of life, well-being, and relationships for transgender men, nonbinary, and gender diverse people AFAB.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Tordoff DM, Lunn MR, Chen B, Flentje A, Dastur Z, Lubensky ME, Capriotti M, Obedin-Maliver J. Testosterone Use and Sexual Function among Transgender Men and Gender Diverse People Assigned Female at Birth. American Journal of Obstetrics & Gynecology. 2023 September 9; doi: doi.org/10.1016/j.ajog.2023.08.035 (article will be live in the near future)

View the full PDF at: https://escholarship.org/uc/item/6bz2x0j6

Official Title: Active social media use and health indicators among sexual and gender minority adults

What Did We Do?

We looked at data from The PRIDE Study 2017 Annual Questionnaire around active social media use and health. To measure active social media use, we considered how participants rated their own use of social networking sites as active or passive and their frequency of commenting on friends’ posts or interacting with others. We examined whether people with more active social media use had better or worse health.

What Was New, Innovative, or Notable?

This was one of the first studies to measure how much LGBTQIA+ people use social media actively, not just how much time they spend on social media. Using social media actively might have different effects than just browsing.

What Did We Learn?

Individuals with more active social media use were more likely to feel depressed, smoke cigarettes, not sleep enough, and not get enough physical activity, compared to individuals with less active social media use.

What Does This Mean for Our Communities?

More active social media usage may play a role in experiencing poor health. While social media usage may also positively affect our health in other ways, being mindful of our social media use may be good for our health.

What’s Next?

We don’t know whether more active use of social media worsens health, or whether people with poorer health use social media more actively. We want to survey LGBTQIA+ individuals over a longer period of time to examine this relationship more closely.

Action Steps:

See www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Vogel EA, Flentje A, Lunn MR, Obedin-Maliver J, Capriotti MR, Ramo DE, Prochaska JJ. Active social media use and health indicators among sexual and gender minority adults. LGBT Health. Vol 0 Ahead of Print. December 28, 2023. https://doi.org/10.1089/lgbt.2023.0170

View the full PDF at: https://escholarship.org/uc/item/30w4w10n

Official Title:

Culturally tailored anti-smoking messages: A randomized trial with U.S. sexual minority young women.

What Did We Do?

Young adult women who are lesbian, gay, bisexual, queer, or another non-heterosexual sexuality (LGBQ+) are at an increased risk of cigarette smoking and smoking-related illnesses when compared to heterosexual women. We conducted a study to understand how to reduce smoking among young adult LGBQ+ women.

Study participants were ages 18-30, identified as LGBQ+, and identified as women. This included 1,212 participants who currently smoke and 1,002 who did not smoke. Participants were recruited from existing groups for online studies (including The PRIDE Study), social media, and a dating app.

We created tailored and non-tailored anti-smoking messages. Tailored messages included an LGBTQ+ logo and slogan, while non-tailored messages did not. Both sets of messages used the same photos and same text that encouraged quitting or avoiding smoking. We randomly assigned participants to see either tailored or non-tailored messages over one month.

Participants answered surveys about their smoking history, plans to purchase cigarettes or quit smoking, attitudes and beliefs about the tobacco industry, and demographics. They saw messages for one month and then answered a follow-up survey.

What Was New, Innovative, or Notable?

Our study was one of the first about helping to quit smoking that focused specifically on young adult LGBQ+ women, as there is a gap in knowledge of effective strategies for this group. Our study is more inclusive by recruiting both cisgender and transgender women participants.

What Did We Learn?

Tailored messages were more effective than non-tailored messages in reducing positive beliefs about the tobacco industry among those who smoke. After seeing the messages for one month, both types of messages had positive effects among those who smoke, such as more plans to quit smoking and fewer plans to purchase cigarettes. Both types of messages also had positive effects among those who do not smoke, such as having more negative attitudes and beliefs about the tobacco industry.

What Does This Mean for Our Communities?

Tailoring anti-smoking messages for the LGBTQ+ community can be effective in reducing positive beliefs about the tobacco industry. This approach can help inform the design of future anti-smoking campaigns.

What’s Next?

We will continue adjusting anti-smoking messages and testing their effects in a follow-up research study. We are also exploring ways to design tailored messages to meet the needs of LGBTQ+ audiences more broadly.

Action Steps:

See www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Tan AS, Chen JT, Keen R, Scout N, Gordon B, Applegate J, Machado A, Hanby E, Liu S, Zulkiewicz B, Ramanadhan S, Obedin-Maliver J, Lunn MR, Viswanath K, Potter J. Culturally tailored anti-smoking messages: A randomized trial with U.S. sexual minority young women. American Journal of Preventive Medicine. 2023 Dec 6:S0749-3797(23)00485-3. doi: https://doi.org/10.1016/j.amepre.2023.12.001. Epub ahead of print. PMID: 38065403.

Official Title:

Family Building and Pregnancy Experiences of Cisgender Sexual Minority Women

What Did We Do?

We asked cisgender women who identify as lesbian, gay, bisexual, or another non-heterosexual sexuality (LGBQ+) in The PRIDE Study about what methods they used to become parents and about their experiences with pregnancy. For example, we asked about whether they carried a pregnancy or used adoption, fostering, surrogacy, donors, and additional methods to become parents. We also asked participants to share the outcome of each of their pregnancies (including live birth, miscarriage, and abortion).

What Was New, Innovative, or Notable?

This was one of the first studies about family building that included all cisgender women who self-identified as LGBQ+ in our study. Many previous studies on family building have been limited to cisgender women in same-sex couples. This excluded a large proportion of the community, such as cisgender LGBQ+ women parents who are single and who are in partnerships with transgender and cisgender men.

What Did We Learn?

18% of cisgender LGBQ+ women in our study were parents. Of the participants who were parents:

- 74% used pregnancy.

- 10% used second-parent adoption of a child their partner carried.

- 10% used adoption.

- 4% used fostering.

- 14% were step-parents.

There were differences in how participants built their families by sexual orientation. Sexual activity leading to pregnancy was the most common method for family building among bisexual women. Lesbian women and queer women were more likely to use donor sperm, second-parent adoption, adoption, and fostering to become parents.

Overall, 19% of the cisgender LGBQ+ women in our study had ever been pregnant, and 24% desired to become pregnant at some point in the future. Among the pregnancies that participants reported:

- 59% resulted in a live birth.

- 23% ended in a miscarriage.

- 15% ended in abortion.

- 2% were ectopic pregnancies occurring outside of the uterus and could not continue.

What Does This Mean for Our Communities?

Cisgender LGBQ+ women experience significant barriers to using pregnancy to become a parent, including difficulty accessing medically assisted reproduction, such as in vitro fertilization (IVF), and financial barriers. In addition, LGBQ+ women’s reproductive healthcare experiences may include discrimination and/or feeling like their identities and experiences are invisible due to assumptions that they are heterosexual and a lack of LGBTQIA+ competency. Therefore, healthcare providers must be familiar with the variety of methods used for family building to better support cisgender LGBQ+ women.

What’s Next?

We plan to study the experiences of cisgender LGBQ+ women and their partners as they try to become pregnant to better understand barriers to accessing care and how to improve the physical and mental health of parents and their children.

Action Steps:

See www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Tordoff DM, Moseson H, Ragosta S, Hastings J, Flentje A, Capriotti MR, Lubensky ME, Lunn MR, Obedin-Maliver J. Family Building and Pregnancy Experiences of Cisgender Sexual Minority Women. AJOG Global Reports. Volume 4; Issue 1; February 2024; doi: https://doi.org/10.1016/j.xagr.2023.100298.

Official Title:

Substance use over time among sexual and gender minority people: Differences at the intersection of sex and gender

What Did We Do?

Past research shows there may be differences in substance use based on gender and sex assigned at birth, but transgender, nonbinary, and gender expansive people (people who do not identify exclusively as a man or exclusively as a woman) were often not included in this research. LGBTQIA+ people may be at greater risk for substance use because of negative experiences such as discrimination related to their identity, which may be different based on gender. We looked at survey responses about substance use from The PRIDE Study over four years (2017-2020). Then, we compared the patterns of substance use among six gender groups: cisgender men, cisgender women, gender expansive people assigned female at birth, gender expansive people assigned male at birth, transgender men, and transgender women.

What Was New, Innovative, or Notable?

This study is one of the largest to look at substance use over time among LGBTQIA+ people and use of multiple different substances among LGBTQIA+ people.

What Did We Learn?

- 49% of LGBTQIA+ people reported little or no substance use.

- Cisgender men were more likely than other gender groups to report heavy alcohol use (with some tobacco, cannabis, and popper/inhalant use).

- Gender expansive people and transgender men were more likely than other gender groups to report a pattern described by primarily cannabis use (with some tobacco and heavy alcohol use).

- Cisgender women, gender expansive people who were assigned female at birth, and transgender men were less likely than other gender groups to report a pattern defined by heavy alcohol use alongside cannabis and tobacco use (with some use of multiple substances)

- Gender expansive people were more likely than other gender groups to report prescription* stimulant use, such as Adderall or Ritalin (with some cannabis, sleeping pill, and heavy alcohol use).

- Gender expansive people who were assigned female at birth were more likely than other gender groups to report sleeping pill use (with some cannabis and prescription* opioid use, such as fentanyl, oxycodone, or OxyContin).

- Cisgender women were less likely than other gender groups to report tobacco use (with some heavy alcohol use and the use of multiple different substances).

* Reported usage included both with and without a prescription.

What Does This Mean for Our Communities?

There are differences in substance use patterns across LGBTQIA+ groups. Understanding these differences can help researchers and healthcare providers identify the unique barriers faced by diverse LGBTQIA+ groups that can help to provide more effective services and care.

What’s Next?

Future research needs to explore why there are differences in patterns of substance use across LGBTQIA+ groups. We have begun to look at how discrimination might relate to substance use for LGBTQIA+ people in The PRIDE Study.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Flentje, A., Sunder, G., Ceja, A., Lisha, N.E., Neilands, T.B., Aouizerat, B.E., Lubensky, M.E., Capriotti, M., Dastur, Z., Lunn, M.R., Obedin-Maliver, J. Substance use over time among sexual and gender minority people: Differences at the intersection of sex and gender. LGBT Health. 2024 January, 11; online ahead of print. doi:https://doi.org/10.1089/lgbt.2023.0055

Access the full paper at: https://escholarship.org/uc/item/7t5050k5

Official Title:

Mental Health Treatment Experiences among Sexual and Gender Minority Individuals: Trauma Exposure, Barriers, Microaggressions, and Treatment Satisfaction

What Did We Do?

Other research has found that LGBTQIA+ people experience trauma more often than non-LGBTQIA+ people, and we wanted to know more about: 1) what types of trauma treatment LGBTQIA+ people have received; 2) if there are barriers that get in the way of seeking treatment; 3) if LGBTQIA+ people have experienced discrimination in treatment; and 4) how satisfied LGBTQIA+ people have been with their treatment. We asked these questions in an optional survey available to The PRIDE Study participants and looked at the 2,685 responses we received.

What Was New, Innovative, or Notable?

This was one of the first studies to look at experiences in treatment that is specific to trauma for LGBTQIA+ people.

What Did We Learn?

The majority (85%) of people in the study had been in therapy in the past, and 56% of people in the study had been in trauma therapy, but not necessarily receiving treatments that have been shown to be effective. The people in the study indicated that they did not experience very many barriers to seeking therapy and experienced low amounts of discrimination. People in the study also were satisfied with their therapy and therapists. We also found that people who had been in trauma therapy reported more barriers and experiences of discrimination than people who had been in other kinds of therapy. Finally, there were differences in barriers to treatment, experiences of discrimination, and satisfaction based on the person’s gender and/or sexual orientation.

What Does This Mean for Our Communities?

These findings tell us that, overall, LGBTQIA+ people with trauma experiences are open and readily seeking therapy. This means trauma therapies need to be sensitive to the needs of LGBTQIA+ people and be easy to find and receive. Additionally, mental health services need to work to reduce barriers and discrimination for certain groups within the LGBTQIA+ community, including bisexual and nonbinary individuals.

What’s Next?

We want to make trauma treatments more available to LGBTQIA+ people and to test which treatments might work best in each community.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Artime TM, Rosenfeld EA, Ong L, Lisha NE, Dilley JW, Shumway M, Edward D, Ceja A, Einhorn L, Lubensky ME, Dastur Z, Lunn MR, Obedin-Maliver J, Cloitre M, Flentje A. Mental Health Treatment Experiences among Sexual and Gender Minority Individuals: Trauma Exposure, Barriers, Microaggressions, and Treatment Satisfaction. Journal of Gay & Lesbian Mental Health. 2024 March 6. doi: https://doi.org/10.1080/19359705.2024.2315976

View the full PDF at: https://escholarship.org/uc/item/36z973vt

Official Title:

Inequities in Conversion Practice Exposure at the Intersection of Ethnoracial and Gender Identities

What Did We Do?

Conversion practices refer to organized attempts to change the sexual orientation and/or gender identity of people who are LGBTQIA+. Some examples include religious rituals and therapy intended to cause a person to associate negative thoughts with being LGBTQIA+. We looked at experiences of conversion practice in The PRIDE Study’s Lifetime Health and Experiences Questionnaire from 2019-2021 among LGTBQIA+ people. We asked participants if they had any conversion practice experiences in their lifetime, the age when they first experienced conversion practice, and the age when they last experienced conversion practice. We then looked at how experiences of conversion practice differed by race, ethnicity, and gender.

What Was New, Innovative, or Notable?

This is one of the first studies that looked at how experiences of conversion practice differ by race, ethnicity, and gender. We considered how different identities experience power and oppression and how this may have shaped the experiences of conversion practice for different LGBTQIA+ groups.

What Did We Learn?

There were 9,274 LGBTQIA+ participants in the study. Of them, 5.7% of LGBTQIA+ participants reported any experiences with conversion practice in their life. On average, participants were 18 years old when they first experienced conversion practice and 21 years old when they last experienced it. This resulted in an average of 3 years between their first and last experience with conversion practice. A higher percentage of transgender and nonbinary participants reported conversion practice experiences, especially participants who are American Indian or Alaska Native and/or Middle Eastern or North African.

What Does This Mean for Our Communities?

Systems of power and oppression may likely shape differences in conversion practice experiences across LGTBQIA+ groups. This may be important for creating federal and local policies that ban conversion practice to protect LGBTQIA+ groups and reduce the harmful effects of such practices, especially for communities who may be affected the most.

What’s Next?

We plan to look at how different experiences of conversion practice affect mental health. This involves understanding how practices targeting sexual orientation, gender identity, or both can impact mental health differently for LGBTQIA+ individuals.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Tran NK, Lett E, Flentje A, Ingram S, Lubensky ME, Dastur Z, Obedin-Maliver J, Lunn MR. Inequities in Conversion Practice Exposure at the Intersection of Ethnoracial and Gender Identities. Am J Public Health. 2024, March 13; 114 (4): 424-434. doi: https://doi.org/10.2105/AJPH.2024.307580

Official Title:

Interest in over-the-counter progestin-only pills among transgender, nonbinary, and gender-expansive individuals in the United States

What Did We Do?

Birth control pills are medicines used to prevent pregnancy. Many birth control pills are made of two hormones: estrogen and progestin. Some pills include just progestin and are called “progestin-only” pills.

In July 2023, the US Food and Drug Administration approved for the first time a progestin-only pill that can be sold without a prescription, or “over the counter.” We asked 1,415 transgender, nonbinary, and gender-expansive (TGE) people assigned female or intersex at birth from all over the US about their interest in using over-the-counter progestin-only pills.

What Was New, Innovative, or Notable?

This is one of the first studies to explore interest in over-the-counter birth control pills among TGE individuals.

What Did We Learn?

Nearly half (45%) of TGE people in this study were interested in using over-the-counter progestin-only pills. Our findings suggest that TGE individuals may be interested in over-the-counter progestin-only pills because they do not contain estrogen and because of the ability to obtain them without a prescription or medical visit.

What Does This Mean for Our Communities?

A large proportion of TGE individuals assigned female or intersex at birth are interested in using over-the-counter progestin-only pills. The availability of these pills being over the counter (without a prescription) has the potential to improve birth control access for TGE people. The findings from this study can help policymakers, doctors, nurses, community members, and drugstore owners to understand that TGE people are interested in over-the-counter progestin-only birth control methods, and to ensure that TGE people are meaningfully included in outreach efforts.

What’s Next?

With an over-the-counter progestin-only birth control pill now approved in the US, we hope to conduct future research to explore usage of this type of medicine and experiences among TGE individuals with this medicine.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Grindlay K, Obedin-Maliver J, Ragosta S, Hastings J, Lunn MR, Flentje A, Capriotti MR, Dastur Z, Lubensky ME, Moseson H. Interest in over-the-counter progestin-only pills among transgender, nonbinary, and gender-expansive individuals in the United States. Am J Obstet Gynecol. 2024 Feb 14; S0002-9378(24) 00076-0. doi: https://doi.org/10.1016/j.ajog.2024.02.006.

Official Title:

Localized and Widespread Chronic Pain in Sexual and Gender Minority People – An Analysis of The PRIDE Study

What Did We Do?

Chronic pain is defined as pain that a person experiences for three months or longer. Other studies have reported that up to 20% of American adults experience chronic pain, but this research has mainly been done with cisgender and heterosexual populations. The goal of our study was to identify and describe the experiences of chronic pain among LGBTQIA+ persons using data from 5,397 participants who completed The PRIDE Study’s 2022 Annual Questionnaire.

What Was New, Innovative, or Notable?

This is one of the first studies to explore if chronic pain is widespread among LGBTQIA+ persons and in which part(s) of the body they experience chronic pain.

What Did We Learn?

The findings from this study highlight that chronic pain in certain areas of the body and having chronic widespread pain are commonly seen in LGBTQIA+ participants in The PRIDE Study. The most common locations of chronic pain in LGBTQIA+ participants are the neck, upper back, and lower back. Approximately one-third of participants who identified as non-binary, another gender identity, a transgender man, queer, asexual/demisexual/gray ace, and another sexual orientation reported having chronic widespread pain.

What Does This Mean for Our Communities?

The findings of this study show that there are increased numbers of LGBTQIA+ persons reporting chronic pain (approximately 55%) compared to other studies with cisgender and heterosexual persons (approximately 20%). Our findings also highlight that chronic widespread pain is present in increased numbers of LGBTQIA+ persons (approximately 15-37%) compared to other studies with cisgender and heterosexual persons (approximately 10%). Chronic pain is a leading cause of disability and decreased quality of life. It is important for healthcare providers to understand there is an increased presence of chronic pain in LGBTQIA+ persons so that they can provide better support and healthcare.

What’s Next?

Future studies are planned to understand what factors lead to increased chronic pain and chronic widespread pain in LGBTQIA+ persons.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Chadwick AL, Lisha NE, Lubensky ME, Dastur Z, Lunn MR, Obedin-Maliver J, Flentje A. Localized and widespread chronic pain in sexual and gender minority people—an analysis of the PRIDE study. Pain Medicine. 2024 March 26; pnae023. doi: https://doi.org/10.1093/pm/pnae023. Epub ahead of print.

View the full paper at: https://escholarship.org/uc/item/4p94g4wt.

Official Title:

The experiences of sexual and gender minority participants with a remote biospecimen collection protocol

What Did We Do?

When studies collect biological samples (such as blood, hair, or saliva), participants traditionally visit one main clinic location to provide their samples. In remote biological sample collection, participants provide their samples at a partner clinic location that is much closer to where the participant lives. The partner clinic then sends these samples back to the research team. This process is meant to make it easy and convenient for people across different locations to participate in medical research.

We looked at feedback from 112 LGBTQIA+ participants in The PRIDE Study who recently donated blood in a remote biological sample collection study to learn more about their experiences. We looked for themes in the challenges that they faced and what they felt worked well. We used this input to develop recommendations for future studies.

What Was New, Innovative, or Notable?

This is one of the first studies to look at the experiences of a diverse group of LGBTQIA+ people who participated in a remote biological sample collection study. This new approach has the potential to improve the size and diversity of participants in studies, but little research has been conducted that looks at how practical the process is for participants.

What Did We Learn?

Participants appreciated the thorough measures in place to protect their privacy. They also liked the opportunity to communicate directly with the research team whenever they had questions or concerns. Some participants expressed that it was difficult to transport study materials mailed to them to bring to the partner clinic. Others said the partner clinic was unfamiliar with the study processes. This sometimes led to delays and/or the study guidelines not being followed consistently.

What Does This Mean for Our Communities?

While remote biological sample collection can be a practical and accessible process for LGBTQIA+ participants, more work must be done to improve the experience for participants. Research teams should create clear and ongoing communication with partner clinics to reduce differences from the study guidelines. Researchers should also consider having the partner clinics take on more responsibility instead of the participants, especially related to the handling of study materials. Finally, researchers should consider alternative approaches for biological sample collection, such as kits that allow for the entire collection process to take place at home or collection through an LGBTQIA+ community health worker.

What’s Next?

Since completing this study, we have conducted remote biological sample collection with many more participants in The PRIDE Study and asked about their experiences. We will be reviewing this additional feedback to inform the development of future studies.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Panyanouvong NL, Lella P, Sunder G, Lubensky ME, Dastur Z, Aouizerat BE, Lisha NE, Neilands TB, Flowers E, Lunn MR, Obedin-Maliver J, Flentje A. The experiences of sexual and gender minority participants with a remote biospecimen collection protocol. Annals of LGBTQ Public and Population Health. 2024 March 26. doi: https://doi.org/10.1891/LGBTQ-2023-0045.

View the full PDF at:

https://escholarship.org/uc/item/27m8r6rt.

Official Title:

Our needs have been ignored for a long time: Factors affecting willingness of Black and Hispanic/Latinx sexual and gender minority communities to donate biospecimens

What Did We Do?

We interviewed 22 LGBTQIA+ participants from The PRIDE Study who identified as Black and/or Hispanic/Latinx to understand what would influence their decision to donate biological samples (i.e., biospecimens, such as blood, hair, saliva, and urine) for substance use research. We did this because Black and Hispanic/Latinx LGBTQIA+ people are underrepresented in substance use research.

What Was New, Innovative, or Notable?

This was one of the first studies to explore what affects willingness to donate biological samples among Black and Hispanic/Latinx LGBTQIA+ communities. This is important because these communities have often been excluded from or mistreated in substance use research.

What Did We Learn?

We identified 8 themes around what influences Black and Hispanic/Latinx LGBTQIA+ participants’ willingness to donate biological samples for substance use research: 1) community benefits; 2) personal benefits; 3) feeling that the community is being taken advantage of; 4) personal risks; 5) convenience; 6) trustworthiness of the research team; 7) perceived value in donating; and 8) biological sample collection being seen as more normal because of the COVID-19 pandemic.

Participants were highly motivated to donate their biological samples to increase knowledge about the needs and improve the health of their communities. Most participants expressed concern about data security, privacy, and misuse. Many participants referenced past unfair and poor treatment that people from their communities have faced in health care and research.

What Does This Mean for Our Communities?

Black and Hispanic/Latinx LGBTQIA+ people are motivated to donate their biological samples if researchers use ethical practices and explain the purpose of the study. Examples include protecting participant data and clearly communicating the steps involved in biological sample donation. Researchers can use the findings from this study to increase representation from Black and Hispanic/Latinx LGBTQIA+ people and to reduce substance use among these communities.

What’s Next?

Researchers can apply the suggestions shared in the paper. For instance, researchers can build trust with Black and Hispanic/Latinx LGBTQIA+ communities and provide education about biological sample donation during the consent process. Future research should explore if following these participant recommendations leads to actual changes in biological sample donation.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Ceja, A., Bruno, V., Panyanouvong, N. L., Aguilar, J., Raygani, S., Lubensky, M. E., Dastur, Z., Lunn, M. R., Obedin-Maliver, J., & Flentje, A. Our needs have been ignored for a long time: Factors affecting willingness of Black and Hispanic/Latinx sexual and gender minority communities to donate biospecimens. Annals of LGBTQ Public and Population Health. 2024 March 22. doi: https://doi.org/10.1891/LGBTQ-2023-0022.

View the full paper at: https://escholarship.org/uc/item/32d9g3wc.

Publication Title:

Intimate partner violence is related to future alcohol use among a nationwide sample of LGBTQIA+ people: Results from The PRIDE Study

What Did We Do?

Intimate partner violence refers to physical, sexual, and emotional abuse from one romantic partner toward another. Since the consequences of intimate partner violence have not been widely studied among LGBTQIA+ people, we know little about how the trauma of experiencing intimate partner violence affects health-related behaviors. In our study, we looked at how intimate partner violence affects how much alcohol LGBTQIA+ people use in the future. We thought that those who experienced intimate partner violence in the past year would drink more alcohol the next year. To check this, we looked at the relationship between experiences of intimate partner violence from The PRIDE Study participants in the 2021 Annual Questionnaire and their alcohol consumption in the 2022 Annual Questionnaire.

What Was New, Innovative, or Notable?

This is one of the first studies of intimate partner violence and alcohol use in LGBTQIA+ people that looks at relationships over time – that is, whether experiences of intimate partner violence are related to a future change in alcohol use. This helps us understand whether the stress of experiencing intimate partner violence may lead to increased alcohol use over time.

What Did We Learn?

Our study found that about 25% of The PRIDE Study participants in the 2021 Annual Questionnaire reported experiencing intimate partner violence in the past year. This intimate partner violence was linked to more alcohol use the following year in the 2022 Annual Questionnaire.

What Does This Mean for Our Communities?

Intimate partner violence is a common experience in our communities. Addressing and preventing intimate partner violence could help improve the health of our communities and reduce alcohol use in LGBTQIA+ communities.

What’s Next?

We are looking at whether this same association exists for other substances, like cannabis, cocaine, and other drugs. Our results will help us to build better resources for LGBTQIA+ people to reduce intimate partner violence.

Action Steps:

See pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at pridestudy.org/collaborate.

Citation:

Metheny N, Tran NK, Scott D, Dastur Z, Lubensky ME, Lunn MR, Obedin-Maliver J, Flentje A. Intimate partner violence is related to future alcohol use among a nationwide sample of LGBTQIA+ people: results from The PRIDE Study. Drug Alcohol Depend. 2024 July 1; 260. doi: https://doi.org/10.1016/j.drugalcdep.2024.111342. Epub ahead of print.

View the full paper at: https://escholarship.org/uc/item/1tq75575.

Publication Title:

Cannabis Use Trajectories Over Time in Relation to Minority Stress and Gender Among Sexual and Gender Minority People

What Did We Do?

Past research shows that stigma and discrimination are related to higher rates of substance use among LGBTQIA+ communities. Not many studies have examined how stigma and discrimination shape cannabis use over longer periods of time. Few studies have looked at cannabis use among transgender and non-binary people. We studied if discrimination or mistreatment, having negative beliefs about being LGBTQIA+, experiencing safety or acceptance as an LGBTQIA+ person, and hiding or sharing one’s LGBTQIA+ identity relate to cannabis use patterns and risk over the next four years (The PRIDE Study Annual Questionnaires 2017-2021). We also looked at if there were differences among cisgender men, cisgender women, gender expansive or non-binary people, transgender men, and transgender women. 

What Was New, Innovative, or Notable?

This is one of very few studies that looked at how stigma and discrimination relate to cannabis use over several years among a large number of LGBTQIA+ people. This study is also one of the largest when compared to other studies to look at differences in cannabis use among LGBTQIA+ subcommunities.

What Did We Learn?

- We found five patterns of cannabis use over four years:
1. Low/no cannabis use.
2. Low to moderate cannabis use or problems related to cannabis use.
3. Moderate cannabis use and/or problems related to cannabis use.
4. Cannabis use or related problems increasing over four years.
5. High cannabis use and/or related problems.

- People who experienced discrimination or mistreatment in the past year used more cannabis and/or had more problems related to cannabis use over time.

- People who held negative beliefs about being LGBTQIA+ used more cannabis and/or had more problems related to cannabis use over time.

- After accounting for cannabis use related to stigma and discrimination, transgender men and gender expansive people in general reported more cannabis use and/or problems related to cannabis use.

What Does This Mean for Our Communities?

This study suggests that stigma and discrimination may have long term impacts on LGBTQIA+ communities’ use of cannabis. This study also suggests that there are differences in cannabis use over time among different LGBTQIA+ subcommunities, which further research should explore. Improving support for people facing stigma and discrimination may be important for preventative health care services.

What’s Next?

Future research is needed to understand what may change patterns of cannabis use over time. There is a need for services, screenings, and education to provide support for LGBTQIA+ people facing stigma and discrimination.

Action Steps:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Flentje, A., Sunder, G., Ceja, A., Lisha, N. E., Neilands, T. B., Aouizerat, B. E., Lubensky, M. E., Capriotti, M. R., Dastur, Z., Lunn, M. R., & Obedin-Maliver, J. (2024). Cannabis use trajectories over time in relation to minority stress and gender among sexual and gender minority people. Addictive Behaviors. 2024 October; 157. doi: https://doi.org/10.1016/j.addbeh.2024.108079. Epub ahead of print.

View the full paper at: https://escholarship.org/uc/item/9p23p6b5.

Publication Title:

Chronic Pelvic Pain among Transgender Men and Gender Diverse Adults Assigned Female at Birth

What Did We Do?

Chronic pelvic pain describes pain in the lower abdomen, pelvis, or genitals that lasts 3 months or more. In our study, we looked at how common chronic pelvic pain was among transgender men and gender diverse people assigned female at birth (AFAB). We also wanted to understand how testosterone use may or may not impact chronic pelvic pain. To do this, we used 3 years of data from The PRIDE Study participants (Annual Questionnaires from 2020, 2021, and 2022). We looked at patterns of chronic pelvic pain overall. We also looked at how starting testosterone therapy impacted chronic pelvic pain over time.

What Was New, Innovative, or Notable?

This is the largest published study conducted on chronic pelvic pain among transgender and gender diverse people, a topic on which little is known.

What Did We Learn?

- Chronic pelvic pain was common. About 1 in 5 (or 18%) of transgender men and gender diverse people AFAB experienced chronic pelvic pain lasting 3 months or more.

- Participants with the following health conditions were more likely to experience chronic pelvic pain: inflammatory bowel disease (like Crohn’s disease and ulcerative colitis), irritable bowel syndrome (IBS), kidney stones, pelvic inflammatory disease (PID), polycystic ovary syndrome (PCOS), and uterine fibroids. People who currently had an implanted device to prevent pregnancy or who had ever been pregnant were also more likely to experience chronic pelvic pain.

- Individuals with chronic pelvic pain reported worse mental health. 51% had a post-traumatic stress disorder (PTSD) diagnosis, 42% reported severe depression symptoms, and 25% reported severe anxiety symptoms.

- We saw that people who currently used testosterone were 21% less likely to experience chronic pelvic pain.

- We saw that some people (about 1 in 10) experienced pelvic pain for the first time after starting testosterone. In contrast, about half of people who reported chronic pelvic pain before testosterone use no longer reported experiencing chronic pelvic pain after starting testosterone.

What Does This Mean for Our Communities?

Chronic pelvic pain is common among transgender men and gender diverse people AFAB. It can have a large impact on mental health and overall well-being. This research suggests that testosterone may reduce pelvic pain for some individuals; while for others, testosterone may be associated with changes that cause new pelvic pain.

It is important that clinical providers do not assume that all cases of chronic pelvic pain among transgender people are caused by testosterone use. Instead, they should take comprehensive health histories and assess symptoms prior to testosterone use. In fact, for some people, testosterone may reduce pelvic pain. We think that testosterone may reduce pelvic pain that is caused by menstruation and endometriosis, a condition in which cells similar to the lining of the uterus grow outside the uterus. For individuals who experience new pelvic pain after starting testosterone, there are known ways in which testosterone would cause changes to the uterus or ovaries that may cause this. In these cases, there may be effective and low-risk therapies available (for example: pelvic floor physical therapy) to improve symptoms. Notably, pelvic pain is the most common reason transgender people report for seeking uterus removal (other than for gender affirmation), but there have been no long-term studies determining if this is an effective treatment for pelvic pain.

What’s Next?

Chronic pelvic pain has many different and sometimes overlapping causes. Treatment approaches for chronic pelvic pain should be customized based on the underlying causes. There is a need to further study the underlying causes of chronic pelvic pain and how testosterone impacts them to develop better treatments for transgender communities.

Action Steps:

See http://pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Tordoff DM, Lunn MR, Flentje A, Atashroo D, Chen B, Dastur Z, Lubensky ME, Capriotti M, Obedin-Maliver J. Chronic Pelvic Pain among Transgender Men and Gender Diverse Adults Assigned Female at Birth. Andrology. 2024; 1-10. doi: https://doi.org/10.1111/andr.13703.

Publication Title:

Parenthood and the Physical and Mental Health of Sexual and Gender Minority Parents: A Cross-Sectional, Observational Analysis from The PRIDE Study

What Did We Do?

We were interested in how parenthood impacts health. Using data from The PRIDE Study participants, we compared the physical and mental health of LGBTQIA+ people who were parents to LGBTQIA+ people who were not parents.

What Was New, Innovative, or Notable?

This was one of the first studies to look at the health of LGBTQIA+ parents themselves. Existing studies primarily focus on the health of children of LGBTQIA+ parents.

What Did We Learn?

Overall, 15% of The PRIDE Study participants were parents. The proportion of people who were parents increased with age: 2% of 18-29 year olds, 18% of 30-39 year olds, and 38% of people aged 40 years and older. 

We found that parenthood was related to mental health. LGBTQIA+ parents in our study were more likely to report recent depression, anxiety, and post-traumatic stress disorder (PTSD) symptoms, compared to LGBTQIA+ people who were not parents. There were also trends in mental health outcomes by age. Compared to older LGBTQIA+ parents aged 40 years and older, younger parents (especially those aged 21-29 years) reported poorer mental health. 

Parenthood was associated with few of the physical health outcomes we looked at. For example, being a parent was not associated with an increased likelihood of diabetes, living with HIV, high blood pressure, alcohol use, or substance use. However, parents were more likely to have ever smoked cigarettes and more likely to have been diagnosed with pelvic inflammatory disease compared to people who were not parents. 

What Does This Mean for Our Communities?

We found that parents experience poor mental health more frequently than non-parents. This finding is similar to what other studies have seen among heterosexual and cisgender parents. While LGBTQIA+ people overall experience significant mental health barriers and unequal treatment, LGBTQIA+ parents may be more likely to encounter inequities and discrimination through family building and parenthood experiences. For example, LGBTQIA+ people are more likely to adopt, foster children, and/or undergo medically assisted reproduction (such as in vitro fertilization) and are more likely to encounter discrimination and/or poor treatment of the non-pregnant parent in these processes. Additionally, internalized homophobia, receiving less support from their families, and a lack of laws that protect and support LGBTQIA+ parents have strong associations with increased symptoms of anxiety and depression among new parents.

What’s Next?

Although LGBTQIA+ people often experience barriers to becoming parents, the number of LGBTQIA+ families are expected to increase in the coming decades. Understanding how parenthood is related to the health of LGBTQIA+ adults is important. Parental health also has important implications for child well-being and development. Future research needs to identify ways for healthcare and other social organizations and services to support diverse LGBTQIA+ families and parents. Therefore, we plan to look at individual, interpersonal, and community-level factors that impact the mental health of LGBTQIA+ parents. 

Action Steps:

See http://pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Tordoff DM, Lunn MR, Snow A, Monseur B, Flentje A, Lubensky ME, Dastur Z, Kaysen D, Leonard SA, Obedin-Maliver J. Parenthood and the Physical and Mental Health of Sexual and Gender Minority Parents: A Cross-Sectional, Observational Analysis from The PRIDE Study. Annals of Epidemiology. 2024 September; 97:62-69. doi: https://doi.org/10.1016/j.annepidem.2024.07.046.

View the full paper at: https://escholarship.org/uc/item/6f44t49g

Publication Title:

Pathways to Parenthood Among Transgender Men and Gender Diverse People Assigned Female or Intersex at Birth in the United States: Analysis of a Cross-Sectional 2019 Survey

What Did We Do?

We asked transgender men and gender diverse individuals who were assigned female or intersex at birth in The PRIDE Study about how they become parents. Some options we asked about included: being pregnant, providing an egg without being pregnant, stepparenting, adoption, fostering, or surrogacy. We also asked if the outcome of the pregnancy was a live birth, abortion, or miscarriage. For those who had a live birth, we asked if the delivery was through a cesarean section (c-section) or vaginal birth. Additionally, we asked individuals who had received testosterone as a gender-affirming hormone therapy if and when they received advice from their healthcare providers on how testosterone would affect their ability to get pregnant and possible options available to help increase their chances of being able to have children in the future.

What Was New, Innovative, or Notable?

This study is one of few studies to examine the paths that transgender men and gender diverse individuals take to become parents in the United States in a large, cross-sectional (one-time survey) sample. Existing research uses interview and focus group data in smaller, mostly non-US settings. This study is different because it is quantitative with large numbers of people and describes how these individuals build their families.

- 36% carried a pregnancy and also provided the egg that resulted in that pregnancy.

- 26% were stepparents.

- 14% were adoptive parents.

What Does This Mean for Our Communities?

While this study shows that transgender men and gender diverse individuals are successful in building families, there are still gaps in the health care that they receive. Individuals who had ever used testosterone often did not receive counseling on how it would affect their ability to get pregnant before starting testosterone. There is a need for additional transgender-specific research and patient resources on pregnancy after testosterone therapy. Healthcare providers should provide information about family building to transgender and gender diverse patients in ways that are consistent, based on evidence, and inclusive.

What’s Next?

We are working to share these findings with transgender men and gender diverse people, healthcare providers, policymakers, advocates, and more to help improve resources and support for building families. Additionally, our team is hard at work preparing a 5-year update of this study to measure family building desires among an expanded sample of transgender men, transgender women, and gender diverse participants in The PRIDE Study today. We’re looking forward to seeing if and how family building experiences and preferences have changed since 2019, and how we can ensure that transgender and gender diverse people receive the highest quality care and support in building their families.

Action Steps:

See http://pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Bane S, Obedin-Maliver J, Ragosta S, Hastings G, Lunn MR, Flentje A, Capriotti MR, Lubensky ME, Tordoff DM, Moseson H. Pathways to Parenthood Among Transgender Men and Gender Diverse People Assigned Female or Intersex at Birth in the United States: Analysis of a Cross-Sectional 2019 Survey. AJOG Global Reports. 2024 August 20. 4(3): 1-14. doi: https://doi.org/10.1016/j.xagr.2024.100381

Publication Title:

Anxiety and depression symptoms among sexual and gender minority people by disability status: Findings from The PRIDE Study, 2019-2020

Community Title:

Anxiety and Depression Symptoms for LGBTQIA+ People with Disabilities

What Did We Do?

There is limited research on the mental health of LGBTQIA+ people with disabilities. We reviewed responses from The PRIDE Study 2019 Annual Questionnaire for participants who identified as having a disability. We looked at their answers to common anxiety and depression surveys.

What Was New, Innovative, or Notable?

This is one of the first studies to look at self-reported anxiety and depression symptoms among a group of LGBTQIA+ people with disabilities.

What Did We Learn?

Our study had 4,961 participants, with 31% reporting that they live with a disability. We found that LGBTQIA+ people had a variety of disabilities. Most of them had either mental disabilities (80%) or physical disabilities (61%). Fewer had intellectual, developmental, or neurodivergent disabilities (36%) or other types of disabilities (6%). Some participants had more than one type of disability.

Compared to their non-disabled peers, LGBTQIA+ people with disabilities scored, on average, higher on surveys that measure anxiety and depression symptoms, indicating more severe symptoms. The scores were clinically significant. We defined “clinical significance” as having a score that was greater than or equal to 10 on the anxiety and/or depression surveys. Compared to their non-disabled peers, LGBTQIA+ people with disabilities were:
- About two to three times more likely to have greater anxiety symptoms. - About three to six times more likely to have greater depression symptoms.
What Does This Mean for Our Communities?

This study shows that LGBTQIA+ people with disabilities experience significant mental health challenges compared to those without disabilities. Specifically, these challenges are seen in higher levels of anxiety and depression symptoms. The findings indicate that future public health programs should include LGBTQIA+ people with disabilities. It’s crucial to raise awareness and educate the LGBTQIA+ community about disability health and to prioritize supporting LGBTQIA+ people with disabilities.

What’s Next?

The results of this study can help increase awareness for public health programs and service providers about the mental health challenges faced by LGBTQIA+ people with disabilities. Future research should look at the factors that may impact the mental health of LGBTQIA+ people with disabilities, such as access to healthcare, discrimination, and social support. By understanding these factors, we can improve tools and strategies to better support the health of LGBTQIA+ people with disabilities.

Action Steps:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Lamba S, Mayo J, Lubensky ME, Dastur Z, Flentje A, Obedin-Maliver J, Lunn MR. Anxiety and depression symptoms among sexual and gender minority people by disability status: Findings from The PRIDE Study, 2019-2020. Ann LGBTQ Public Popul Health. 2024 September 10. Epub ahead of print. doi: https://doi.org/10.1891/LGBTQ-2024-0011.

View the full paper at: https://escholarship.org/uc/item/3jf127n3.

Publication Title:

Levels and outcomes of 12-step participation among sexual and gender minority subgroups

What Did We Do?

We asked LGBTQIA+ people about their alcohol and other substance use and experiences with 12-Step programs, like Alcoholics Anonymous. This helped us get a better understanding of which members of the LGBTQIA+ community are more likely to get involved in 12-Step programs and how well these programs work for them.

What Was New, Innovative, or Notable?

This is one of the first studies that looks at how well 12-Step programs work for members of the LGBTQIA+ community. LGBTQIA+ people are more likely than heterosexual and cisgender people to experience challenges related to alcohol and other substance use, yet there is not very much research that looks at LGBTQIA+ people’s experiences in 12-Step programs and how well these programs work for them. 

What Did We Learn?

We learned that, overall, LGBTQIA+ people who are experiencing challenges with alcohol and other substances who get more involved in 12-Step programs have more improvement with their substance use challenges than members of the community who are less active in these programs. Examples of being more involved in 12-Step programs include attending more meetings and participating more in program activities. We also learned that gay and queer respondents with alcohol-related challenges were more likely than other respondents to have ever participated in 12-Step programs. Lastly, we learned that lesbian respondents with other substance-related challenges were less likely than other respondents to have ever participated in 12-Step programs.

What Does This Mean for Our Communities?

This study suggests that LGBTQIA+ people who are experiencing challenges with their alcohol and other substance use may benefit from participating in 12-Step programs, and further research in this area is needed. Younger LGBTQIA+ people and LGBTQIA+ people who don’t identify as gay or queer may benefit from additional support from friends, family, or therapists to help them get involved in 12-Step programs.

What’s Next?

We would like to compare how effective 12-Step programs are for LGBTQIA+ people relative to other mutual support groups for substance use, like SMART Recovery.

Action Steps:

See http://pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

McGeough BL, Zemore SE, Dastur Z, Neilands TB, Lisha NE, Lunn MR, Obedin-Maliver J, Lubensky ME, Flentje A. Levels and outcomes of 12-step participation among sexual and gender minority subgroups. Journal of Substance Use and Addiction Treatment. 2024 September 9; 209519. doi: https://doi.org/10.1016/j.josat.2024.209519.

Publication Title:

Conversion practice recall and mental health symptoms in sexual and gender minority adults in the USA: a cross-sectional study

What Did We Do?

We looked at how different experiences of conversion practices are related to mental health and whether this relationship is different between cisgender people and transgender, nonbinary, and gender diverse people. Conversion practices are organized efforts to change LGBTQIA+ people’s sexual orientation and/or gender identity. Using data from The PRIDE Study 2019-2021 Lifetime and Annual Questionnaires, we saw how conversion practices targeting sexual orientation and/or gender identity are related to symptoms of anxiety, depression, post-traumatic stress disorder, and suicide. We considered how past mental health symptoms may affect this relationship.

What Was New, Innovative, or Notable?

This is one of the first studies focused on how different experiences of conversion practice for cisgender people and transgender, nonbinary, and gender diverse people are differently related to mental health. We also looked at how past mental health challenges might affect the relationship between conversion practices and current mental health symptoms.

What Did We Learn?

Of the 4,426 participants in this study:

- 3.4% reported conversion practices targeting only sexual orientation.
- 1.0% reported conversion practices targeting gender identity.
- 1.0% reported conversion practices targeting both.

We found that conversion practices were related to greater symptoms of depression, post-traumatic stress disorder, and suicide. This relationship was strongest for participants who experienced both forms of conversion practice in their lifetime. We did not see an association with anxiety symptoms. We also found that the relationship between conversion practice and mental health (apart from suicide) was largely similar between cisgender participants and transgender, nonbinary, and gender diverse participants.

We found that past mental health challenges explained some of the relationship between conversion practices and current mental health symptoms, but it did not change the main findings of this study.

What Does This Mean for Our Communities?

Conversion practices and other efforts to change people to be heterosexual and/or cisgender create a harmful environment for LGBTQIA+ people. This may lead to delays for LGBTQIA+ people in figuring out their identity, self-hatred, isolation, and a negative self-image, which can worsen mental health. This study shows the need to ban conversion practices, as they are unethical and harmful to the mental health of LGBTQIA+ communities. In addition, effective policy action is needed at the federal, state, and local levels. These actions include: 1) educating families, religious leaders, and mental health providers; 2) creating support networks for LGBTQIA+ youth; and 3) supporting survivors of conversion practices.

What’s Next?

There are currently 28 states that have state or local laws that fully or partially ban conversion practices for minors. We plan to use this research and work with policy advocates to support a nationwide ban on conversion practices to protect the health and wellbeing of LGBTQIA+ people.

Action Steps:
See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Tran NK, Lett E, Cassese B, Streed Jr CG, Kinitz DJ, Ingram S, Sprague K, Dastur Z, Lubensky ME, Flentje A, Obedin-Maliver J, Lunn MR. Conversion practice recall and mental health symptoms in sexual and gender minority adults in the USA: a cross-sectional study. The Lancet Psychiatry. 2024 September 30. Epub ahead of print. doi: https://doi.org/10.1016/S2215-0366(24)00251-7.

Publication Title:

Contraceptive use among transgender men and gender diverse individuals in the United States: reasons for use, non-use, and methods used for pregnancy prevention.


What Did We Do?

We focused the study on understanding transgender and gender-diverse (TGD) people’s history of using contraception (commonly called “birth control”) specifically for the goal of not getting pregnant, and how use of birth control is different (or not) among TGD people who also use testosterone. We asked TGD people who were assigned female or intersex at birth in The PRIDE study to take a survey with questions on their own birth control use, their reasons for birth control use, and about their testosterone use.

What Was New, Innovative, or Notable?

This is one of the first studies to look at birth control use to avoid pregnancy among TGD people who were assigned female or intersex at birth.

TGD people who were assigned female or intersex at birth may want or need to use birth control. However, much research on contraception has left out or overlooked the needs and experiences of TGD people. As a result, some people, including doctors, have incorrect information about contraception methods and considerations for TGD people. For instance, among people who use testosterone to affirm their gender, it is common to hear the belief that testosterone prevents pregnancy; but this is not fully true and standard forms of birth control are still recommended if pregnancy is not desired and people engage in penis-in-vagina sex. Similarly, it is common to hear TGD people say that their doctor did not know how to counsel them on birth control options.

What Did We Learn?

Among the 1,694 TGD individuals assigned female or intersex at birth who completed the survey, most (71%) had used at least one type of birth control in their lifetime. Out of this group, about half (49%) had used birth control because they wanted to avoid getting pregnant. Other common reasons for birth control use included a desire to avoid period symptoms, stop menstrual bleeding, and avoid getting a sexually transmitted infection.

Participants reported the use of a wide range of birth control methods.

The types of birth control that were most commonly used AT SOME POINT in participants’ lives were:

- Condoms (92%)
- Hormonal birth control pills (63%)
- Withdrawal (“Pulling out”)( 46%)

The types of birth control that participants were most commonly CURRENTLY using included:

- External condoms (35%)
- Hormonal IUD (small t-shaped device inserted into the uterus that contains hormones) (25%)
- Not having sex where sperm is released in/near a vagina (19%)

Some people said that they had previously (7%) or were currently (4%) relying on testosterone hormones to avoid getting pregnant. Participants who had ever used testosterone were less likely to be currently using birth control with hormones in it (birth control pills/birth control patch/birth control ring) to avoid pregnancy compared to participants who had never used testosterone. The most common reason for never using birth control was if the participant did not engage in penis-in-vagina sex. The most common non-pregnancy-related reason for not using birth control was a desire to avoid estrogen or feminizing hormones out of a worry that it might impact their gender affirmation process.

What Does This Mean for Our Communities?

Each TGD person has different needs when it comes to their desire to get pregnant or not and their reasons to use birth control – which can include gender affirmation and avoiding period symptoms. Our study shows that providers should not make assumptions about interest in the use and type of birth control for TGD people. Instead, doctors and advocates can ask and counsel TGD patients on all available birth control methods, centering the needs and goals of the individual. We need to consider an individual’s potential fears, including that birth control could interfere with their hormone treatment and whether or not their body reflects the way they feel about their gender.

What’s Next?

We will work to share these findings with as many relevant groups as we can – transgender men and gender diverse people, healthcare providers, policymakers, advocates, and more – so that we all have the data we need to plan for and prevent pregnancies. Additionally, our team is hard at work preparing a 5-year update of this study to measure birth control needs and experiences among an expanded sample of transgender men, transgender women, and gender diverse participants in The PRIDE Study today. We’re looking forward to seeing if and how birth control experiences and preferences have changed since 2019, and how we can ensure that TGD people receive the highest quality care and support the ability to make their own informed decisions in their reproductive lives.

Action Steps:
See http://pridestudy.org/study for more information and to share this study with your friends and family.

If you are interested in conducting research related to LGBTQIA+ health, please learn more about collaborating with The PRIDE Study at http://pridestudy.org/collaborate.

Citation:

Obedin-Maliver J, Snow A, Ragosta S, Fix L, Hastings J, Lubensky ME, Capriotti MR, Dastur Z, Flentje A, Lunn MR, Moseson H. Contraceptive use among transgender men and gender diverse individuals in the United States: reasons for use, non-use, and methods used for pregnancy prevention. Contraception. 2024 Sep 26: 110719. Epub ahead of print. doi: https://doi.org/10.1016/j.contraception.2024.110719.